Psoriatic Arthritis Journal - 2.5 year Update Page 63

[RamonaKennon]

My brother has been recently diagnosed with psoriatic arthritis and his doctor is telling him to get off carbohydrates. This after I have been encouraging him to become a McDougaller. Can anyone help me with my brother's conundrum?

[WeeSpeck]

Hi Nicoles,

I follow your journal with interest because my husband also suffer(ed) from psoriatic arthritis. There was a point in time when he was so crippled up and swollen with the pain in his joints that he could barely walk. He could not make a fist.

After many doctor visits and many drug experiments they put him on a very strong medication that finally eased his symptoms.

I am happy to say that since he has switched to a McDougall diet, eliminated the dairy and the animal products, he has been able to stop taking his medication.

It has been close to 3 months and he has not experienced in clicking, swelling or pain in his joints. He has not gone so far to say he is cured, but he is cautiously optimistic that he may have taken a huge step towards mastering this problem.

Please, keep posting your challenges and successes. You help me when you share this journey.

Thank you!

[nicoles]

Ramona, what kind of help would you like? let me know!

WeeSpeck, I am so glad to hear that your husband is off meds and doing so well! I am relieved that you find this journal helpful - that was my whole intention when I started it; I was looking for another person with psoriatic arthritis who had used dietary changes; could not find one anywhere.

============================================

I am short on time once more, but I will begin here and it may take a few posts to explain/report all that I have been doing in the last few months.

On June 22nd I wrote:

It has been a really long time since I posted in my journal. In that lapsed-journalling time I tried a short water fast for a few days just to see if fasting really is anti-inflammatory. It is. I am not recommending it to anyone, and I won't be doing it again - just too unpleasant and not entirely safe to risk it, unless it is under strict supervision.

I have a new perspective on water fasting now, and I want to more fully explain what I did/went through last Spring/early Summer to explain it.


My motivation for fasting on water only came from encountering many different sources citing that it was beneficial for autoimmune conditions. Doug Lisle and Dr Alan Goldhamer at True North talk about autoimmune conditions on their website, Dr Fuhrman clearly is a fan of the process and there were some studies done in Europe in the 80s that showed a beneficial effect. (I will post the sources later, no time right now )



It seemed fairly easy, free (I like free stuff ) and relatively harmless, especially if only for a few days. So I got out as many books as I could find about fasting from the library, one of which was Dr Fuhrman's Fasting and Eating for Health, and read them to prepare.



Now when I say I read them, what I really mean is I skimmed them looking for anything about autoimmune conditions and then basically only really read those parts.



This was a mistake, because I misunderstood many things about the fasting process as a result.



So armed with this limited knowledge, I blithely jumped right in. I had been McDougalling for a good six months, and figured I did not need to do the veggie juicing/raw veggie intake that almost all sources recommended be in the diet for 6-12 weeks before a water fast.



Most sources also recommended using a warm water enema during the fast, which I thought was gross, so I did not get one to have in the house. I also did not buy distilled water, which is another frequent recommendation, because we have a water filter.



I did take notes to chart my progress in a journal, which I am referring to now.



The first day I basically only consumed a vegetable broth, and that day was fine for awhile- I had a ton of energy, and the inflammation I felt at the time went down noticeable at about hour 20 of no solid food.



At about hour 21 I got a headache, which steadily increased until I had a terrible, horrible, full-blown migraine, and this kept me up all night. I was nauseous, dizzy weak and my head was pounding after I woke up from a two-to-three hour sleep.



These symptoms were said to be "detox" in one of the books I had read (detox was not something I believed in at the time) but the books said enemas helped with this sort of thing, so I staggered around the corner to a CVS and got one. I don't like enemas, but I will say this - it worked; within minutes after the enema, my headache and nausea subsided to a manageable level.



At this point I noticed that, apart from feeling like I was sick with a flu, I felt fine; joints were perfection. I was sad because it seemed so hopeless - feel perfect in the joints but not any other way, or feel healthy enough but not in the joints. The pity pants came on and stayed on for the rest of the fast ( )



I continued on only water for two more days, fantasizing about food non-stop, depressed, moody, feeling very weak, dizzy and with heart palpitations (I was a fool, to be sure) and broke the fast with raw, organic fresh carrot juice (we already owned a juicer for about 10 years,) which tasted metallic and made my mouth and throat burn.



Within minutes of drinking the juice I had a return of inflammation throughout my body. (This is part of why I think carrots are "bad" for me, an opinion I may revise soon.)



Although this experience was verrry unpleasant, it made starting on the elimination diet a breeze - it really does reset your taste buds, as Dr Doug Lisle says in the Pleasure Trap. I felt very good for two and a half months afterwards, although not perfect. It did help make a huge leap in my healing.



I also lost 11 pounds during that short time, which I never gained back although everyone I knew said I would.


============================================



After that first fast, my opinion was that water fasting was not for me - stronger, hardier souls than I could withstand the physical unpleasantness, the enemas (ew) and the miserable cravings that bombarded my mind non-stop. Plus, I could not do ANYTHING at all except lie down for the duration of the fasting period. Not a feasible future option, was my opinion, but at least I had given it a shot.


During my flare in September, however, I was in desperate pain and remembered the anti-inflammatory properties of that first fast, so I fasted on water again, this time for two days - with the same experience: headaches, nausea, cravings, heart palpitations, dizziness, fatigue and inflammation relief, which unfortunately returned after I ate some cooked zucchini, a food I had tested on the elimination diet and that did not cause me problems.



However, after my flare in September (more on why I now think that happened and what I did afterward in future posts) I learned a great deal more about water fasting and - very important - preparing correctly for water fasting. I then fasted again on water for the same amount of time, about a month ago. And I had a totally different, positive experience.



I had no headaches, nausea or dizziness. I did not crave food AT ALL. I felt just wonderful, and the water tasted delicious - like tropical nectar. I was tired-ish, but not too much (I actually had to restrain my self from doing too much, lest I exhaust myself and get in the way of the fast "working") and my inflammation went down and STAYED DOWN after the fast, to this date.



After this experience, I now think water fasting has a positive role to play in healing from autoimmune conditions, BUT ONLY WHEN DONE CORRECTLY AND PREPARED FOR APPROPRIATELY. Sorry for the allcaps - I am not yelling, I just do not want to be responsible for anyone doing this recklessly, as I did the first time. I was lucky that I was basically OK after that, and I don't want anyone else to make that mistake if I can help them not to.



============================================



Whew, this was a long post! I have much more to say and explain, such as what I did differently, and how I prepared for this last fast, but that will have to wait for another day.



Cheers to all!



Nicole

[RamonaKennon]

Nicole,
Thanks for answering. My brother is wondering what can replace bread, since the doctor has said no wheat (his doctor actually said no starches, but we know better) and I already know that nightshade should be limited for arthritis. Do you eat bread? If so what? I would like to see my brother pain free and off meds as soon as possible. As you have experienced this disease takes over your life until it's under control.

[nicoles]

Ramona,

HOw strange that the doctor is telling him to eat no carbohydrates! Does the doc want him to lose weight? I never heard of that as a treatment for PsA in all my far-reaching searches.

Anyway, I don't eat bread - both to avoid the wheat and to avoid the yeast, which always bothered me a bit.

I eat:

Winter squashes (butternut, acorn, etc.)
Sweet Potatoes/Yams (all varieties)
Brown Rice
Quinoa
Turnips
Rutabaga
Celeriac
Beets

Kale
Collards
Bok Choy
Romaine, Iceburg, Butter Lettuce
Red and Green Cabbage
Parsley
Broccoli
Cauliflower
Brussels Sprouts
asparagus
cucumber
celery
Artichokes


White beans*
azuki beans*
black beans*
lima beans* (yum!)

*homemade


Fennel
scallions
white, yellow and red onions
garlic
shallots

apples
pears
blueberries
raspberries
blackberries
pomegranates

flax seed
avocado
sesame seeds

Fresh ginger
Fresh Turmeric (hard to find)
fresh sage
fresh rosemary
fresh oregano
fresh thyme
Bay leaf (in soups and rice, as flavor)


and water (so far, after slow additions on the elimination diet over many months - still adding)

I occasionally eat:
White rice (in veggie sushi at a tiny restaurant near us that is accommodating)
fresh corn and corn tortillas without oil ( the trader joe's near us sells them)
Fresh coconut
pineapple


I Don't Eat:

Salt
Sugar, honey, maple syrup, molasses
dried fruit
mangoes(anymore)
bananas
carrots
citrus
nightshades
spinach
walnuts
arugula
watercress
Soy sauce, tamari or Bragg's Liquid Aminos
Soy beans or soy milk
processed plant milks

caffeine of any kind

packages spices of any kind (wheat is often a filler)

(and of course, dairy meat, and refined oil or white flour)

There are many things I have not tried yet, that I would like to add to my diet, but I only add 1 new food per week, maximum, so the list grows slowly. When I add a food that causes me some trouble, I re-test it twice more to rule out other flare-up factors, such as lack of sleep, over-exertion, emotional stress and PMS.

Hope this helps! Ask me anything, I love to be of any small help! That goes for anyone else reading this, too, by the way. PM me if you don't want to lay it all out for the world to see. I am not saying I am an expert, but I find it helpful to share with others what I try and learn what they have tried.

Cheers!

Nicole

[blue]

Nicole
I'm wondering if you are still seeing your rheumy and what, if anything, he is doing for you now that you are managing your symptoms with diet?
Blue

[Debbie]

Nicole
I'm wondering if you are still seeing your rheumy and what, if anything, he is doing for you now that you are managing your symptoms with diet?
Blue

Can I expand this question?

What does he think about your managing this with diet? Does he thinks its coincidence or like any other autoimmune disease, it wax and wanes. (BTW I hate that term as Ive heard it so much with my own AI)

I guess all this is if you even still see him


Oh one more question, do you (I cant remember for the life of me) do you also have psoriasis?

[nicoles]

Hey Blue! How was clothes shopping?

Hey Debbie I no longer have psoriasis, it has never returned. My nails did get a little psoriatic for awhile, but that is gone now too.


Anyway -to answer your questions,

On January 28th, 2011 I wrote this about my "new" rheumy:

Just got back from my new rheumatologist!

He is fine with me going off my meds and said about the diet "If you have already been observing triggers, then by all means avoid them"

Which basically isn't fully acknowledging dietary impact on arthritis, but is a huge step up from being actively discouraged from 'lifestyle' change self-treatment.

Well, he was a nice guy, patient and not pushy or aggressive and listened, so I liked him much more by comparison to the first one. He did say at that meeting that he thought the positive benefits that I was having from food was probably really a result of a surge in new immune cell production in the bone marrow after I went off the immunosuppressor, azathioprine, and that I would soon be feeling unwell because of that, but then why not avoid apparent dietary triggers, too?

I went a few months later to my ob/gyn, and she told me that he had communicated with her about me (one of the things I like about both these docs is that they are willing to communicate with each other, and be a "team" of support for me) and said that ultimately his opinion was that I should be on azathioprine. I was a little disappointed when I heard that, and felt that maybe I was just seeing what I wanted to see when I visited him.

I did not go to any doctors for awhile, then after that flare in September I revisited the doctor, who took blood and recorded that my SED rate was 8, down from 52 where it had been when I was on azathioprine many months before.

He assumed that I had been taking the meds the whole time without getting blood tests, and scolded me roundly for that, and for allegedly filling scripts without visits to the MD. I told him it was just diet and he flat out did not believe me.

He then said that I should get an X-Ray of all my joint to assess the damage already done. I said "No, thank you," and am not planning to return unless I have a need.

So to answer the question more succinctly, not really under rheumy supervision, haven't found one that has any interest (in reality) in helping me with this, and definitely have not found one that has any clue of how to help except for meds and too many x-rays for my liking.


Debbie He also seems to be of the coincidence, wax-and-wane camp of the disease activity, but I doubt he has ever seen a recovery so, what can ya do?

ON a side note, I live walking distance from the medical practice of the two Docs in Forks Over Knives - Alona Pulde and Matt Lederman, I think their names are, but when I called their waiting time for new patients was over a year! Guess they got pretty popular...

Bummer, though.

[Debbie]

Hey Debbie I no longer have psoriasis, it has never returned. My nails did get a little psoriatic for awhile, but that is gone now too.


Debbie He also seems to be of the coincidence, wax-and-wane camp of the disease activity, but I doubt he has ever seen a recovery so, what can ya do?

ON a side note, I live walking distance from the medical practice of the two Docs in Forks Over Knives - Alona Pulde and Matt Lederman, I think their names are, but when I called their waiting time for new patients was over a year! Guess they got pretty popular...

Bummer, though.

I thought I remembered you saying you did have it, but just couldnt remember. I was asking because when I started researching PA, I found that some people who have it do not have psoriasis. I know I had risk factors for it, the psorasis and nail pitting and ridging, but was surprised to hear some have no psoriasis. Wonder how they make that diagnosis? LOL

Yeah, I gave up on my derm, my 3rd, after he also said diet had no effect on psoriasis or any other diseases. I have accidently several times caused a flare by eating something with dairy, so I know pretty darn well. But the last time I saw him was when I got pregnant with, well I miscarried, he had prescribed me tazorac cream and sounded so annoyed when I asked him about risks in getting pregnant. He had said it was a "theoretical risk". Well that "risk" went out the window when I showed up pregnant (he knew we were trying to concieve) and he furiously tried to calculate last dose, how much I used and how often. I was in a panic and miscarried 5 weeks later. (Ironically, the defect of this stuff was nuerotube defects and this pregnancy failed to fold the second time, which had I carried it to term would of at best had spina bifida. ) I was really angry. Never saw a doctor again, except to seek counsel from Dr. McDougall and of course obstetrics. Which of course Im so glad I did.

You should put yourself on that waiting list, just in case. I would love to have a like minded doctor.

[nicoles]

Debbie, it is a wonder anyone ever does get diagnosed with PA- it is so varied!

What a terrible experience with your dermatologist! I am so sorry you had to go through that.

That seems pretty typical of doctors thouigh - I told my rheumy I was still trying to have a baby when I first got on the azathioprine, he said it was fine; went to my ob/gyn and told her what I was on and she said "NO WAY JOSE!" apparently azathioprine is ovaro-toxic and causes potential health defects in a developing fetus. The rheumy refused to work with her on that (she knew who he was and anticipated that but I gave him a chance, which he failed with muted, grayscale colors)so I found the other one.

I am pretty sick of doctors telling me they know more about my health experience than I do. If you have seen and experienced the dairy/psoriasis connection, then it is there; they can go stuff it.

I did put myself on the waiting list for those two FOK docs - sometime in July, I think it was. I might do a follow-up call soon, but it probably won't be until the summer that I have a chance to get in there.

[lmggallagher]

Nicole I am going to add reading your posts as a guilty pleasure, really informative, even If I haven't got the same condition!

BTW, the Lederman/Pulde docs, who are like right in your neighborhood may have that long waiting list because --- he has taken a year off to work with Whole Foods and is developing their Healthy Eating program.

Yay, this is fantastic -- as WF is like getting totally behind the WOE and has all the FOK docs on their science and health advisory board now. But Pulde/Lederman are their main folks for designing the program - go online to check it out. WF has physical training locations now in 5 of their stores - one in Oakland too, but that's the only CAL one so far.

The other reason that they have such a long waiting list is she just had a baby. Really recently - so she may be doing a maternity leave as well.

I learned all this from the the Lederman/ John Mackey (Whole Foods guy) presentation from the (you guessed it) ASW. Well, even though I haven't figured out how to pull off the ASW Video Slumber party, I am at least sharing some of what I learned!

[Summer]

Nicole I am going to add reading your posts... really informative,

Same here, I'm looking forward to hearing more about what changes with fasting you made.

[RamonaKennon]

I'm also interested how you modified your fast. I read The Pleasure Trap, but of course to learn about fasting to heal your body you have to go to the clinic. Money is way too tight for us right now. I have fasted on occasion for various reasons over the last 40 years. To gain a little control over my health seems a very good reason, and if it helps me with my relatively minor issues it might really help my brother with the severe pain he is trying to get under control.

[blue]

Thanks for answering, Nicole. I guess I am pretty much in the same boat in terms of managing my own self-care and don't have much use for a doctor to treat my pain anymore, which is way cool of course! When I was sick last week I saw my doctor for the first time since last summer and told him about my diet and my improvements and he was really surprised lol I'm sure he was surprised I didn't ask for a pain med refill!

[nicoles]

BTW, the Lederman/Pulde docs, who are like right in your neighborhood may have that long waiting list because --- he has taken a year off to work with Whole Foods and is developing their Healthy Eating program.

Yay, this is fantastic -- as WF is like getting totally behind the WOE and has all the FOK docs on their science and health advisory board now. But Pulde/Lederman are their main folks for designing the program - go online to check it out. WF has physical training locations now in 5 of their stores - one in Oakland too, but that's the only CAL one so far.

The other reason that they have such a long waiting list is she just had a baby. Really recently - so she may be doing a maternity leave as well.

Oh this makes so much sense! And good for them! I might get in touch with them again soon and see what is up....maybe they need a baysitter in exchange for care?

I learned all this from the the Lederman/ John Mackey (Whole Foods guy) presentation from the (you guessed it) ASW. Well, even though I haven't figured out how to pull off the ASW Video Slumber party, I am at least sharing some of what I learned!

Yes, it IS better than nothing....<sad trombone for me and all the others who DON'T have the ASW videos>

Summer and Ramona (and anyone else who is interested )I will be updating more about fasting soon!

I had a few days in a row of unexpected stressful urgent things to deal with. A more elaborate explanation of fasting is sitting in a word doc draft on my desktop - I have a lot to say and I want it to be helpful and easy to read, so it may take a few more days.

Blue I am so glad you don't need a doctor to treat your pain now!!!! It's the best feeling, isn't it? Love it when doctors almost fall over after they see you six months after changing your ways - they have NEVER seen weight loss and improved numbers like they do with us folks, I'd bet.

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


I have been feeling happy and sad this week. Bittersweet, I guess you'd call it.

I have a friend on a totally different forum* I visit who has RA.

*for autoimmune folks, but where no-one approaches their treatment with diet. Sometimes it is nice to talk with people who get it without explanation, although they don't get eating this way, sadly. SADly. OK bad joke

Her pain has only gotten worse over the last 5 years, even after trying every treatment in the book, great and small. She is at the point of signing up for clinical trials of new medications; she has done two trials so far, a year long each, and neither had a positive effect on her disease or symptoms.

Both trials , however, have caused her "adverse health events"(severe long-term infections that did not respond to antibiotics.)

Her rheumy, doctor and the trial doctors all treat her as an interesting specimen whose disease does not behave the same as other patients', and she receives no empathy or warmth from them, although she is in great physical, emotional and spiritual pain.

Unfortunately, she is not open to trying more dietary changes - she went vegan long ago and has tried many supplements like fish oil, but she still eats refined flour and vegan junk food and persists in having deep faith in the medical system over anything else.

I can't say for sure whether cleaning up her diet would help or not. I wish I could do anything to alleviate her pain and despair.

It is so sad; I am so sad, I feel for her so much. I have been only at the smallest edge of the physical pain and unrelenting hopelessness that she is going through and it was horrible; I can't imagine it being as bad as it is for her.

But I am so glad and I am so grateful to have found this WOE, to have found Dr McDougall, Jeff Novick and Dr Fuhrman, and that my disease seems to respond favorably to this lifestyle.

I wish she could have that.


More later my friends,

Nicole