Fibromyalgia and PB page 3

[periquin]

After many years at a VA pain management clinic and group therapy, plus Aleve like it was peanuts, I beat the beast.

Basically, I combined advice from two people. Dr. Andrew Weil's "8 Weeks to Optimal Health" was the start. During those weeks I encountered Doug Kaufmann on TV. I continued with Weil's program, especially the distilled water, and added Kaufmann's Phase one diet.

I am still adhering to the phase one diet. It is more astringent than the PB diet. Some things of PB are not allowed on Phase one. I have no more discomfort about my body except to pain due to 'structural damage'. Others who were in my VA group had success with only a change to distilled water.

Kaufmann has a web site--- www.knowthecause.com And, yes, the cause--at least in my case-- was a systemic fungal overload most likely introduced by a heavy antibiotics Tx.

[cillakat]

I came to primal through GAPS/SCD, along w/ some BED stuff, so I'd love to pick your brain on those methods!

Please, pick away

...any thoughts to share on Primal Defense probiotic?

I love Primal Defense. Love love love primal defense.

This doc I created shows my three faves compared SBS. Strains are highlighted to show which ones are not in the other formulas.

This is really great thread! I was DX with Lupus about a year ago, started really suffering 1.5 years from it a.....I have had mine tested numerous times and seem to be round the middle of the range.

Quest? Or Labcorp? Some local labs haven't updated their D reference ranges and are still using 20 ng/mL as a low end of normal. It's not. 32 ng/mL is the accepted for lab norm minimums but even that is too low. There is not a D researcher anywhere that in 2010, is saying 32 ng/mL is acceptable. They're all saying now, a minimum of 40 (with some saying a mimum of 50 or 60).

If Quest did your test - and they do more D testing than anyone else, know that there are major problems with their test - generally causing them to run about 1/3 too high. .....though not always - sometimes they're low. More on that after the following questions.

at what latitude do you live?
how much midday, full body, unprotected summer exposure do you get?
how much 'incidental' 'out and about' type expousre?
do you wear s/s? hats? long sleeves?
seek shade?

Quest and Vitamin D
Accuracy and precision issues abound due to the complexity of Quest's testing method, the poorly trained lab techs, lack of oversight of the techs and too many tests to run. The complexity of the test alone isn't a problem but combined with the latter factors, it's a recipe for disaster: and it has been exactly that. Another MAJOR player is that it doesn't appear that Quest has normed their test to the gold standard (dia sorin) which is used in all of the D studies. This is huge and Quest isn't talking. Unless it's normed, the result is truly meaningless. Read more here:
John Cannell's excellent 7/2008 Newsletter - read all of it
NYT article - even though they mucked up some of the key info, it's still very good.
Vitamin D Council Quest / Labcorp Testing Project

and here
and here
If you've used Quest, divide your result by 1.3 to obtain a result that is likely to be more accurate AND consider retesting via LabCorp or ZRT just to be 'sure'. I prefer ZRT...details below.

If you've used LabCorp or ZRT, double check your number. What exactly is it? The middle of the reference range is 60-65 ng/mL. Since D toxicity has NEVER been documented at a 25(OH)D level below 200 ng/mL, and since there are documeted cases of serum D reaching 100 ng/mL from sun exposure alone (in lifeguards in Miami), it would seem reasonable, if indeed your levels are already at 60-65 ng/mL, to try to bring them up to the 80ish range - or possibly even 100 ng/mL though the latter I would do only with sun or sun/supplements in combo - not with sun alone.

The ZRT test (home finger stick test) can be ordered from three different outfits. Here they are in order of my preference:
D*Action study via Grassroots Health - the requirement is 2x/year for 5 years. Please consider joining the study.
The Vitamin D Council - worthy of *all* of our support. ZRT donates $10 to them everytime a test is purchased through the D council's website. But please, join the Grassroots Health study and just donate the $10 to the D Council directly.
ZRT sells the test directly
And why is ZRT's test okay when it's LC-MS/MS like Quest's test?


If it's in the budget, please join the study. Be a part of something that will change the face of public health all over the world. Support the The Vitamin D Council, if you can, for the very same reasons. What Carole (of the grassroots health) and John Cannell (D Council) are both doing is - amazing. unparallelled. superhuman. They are changing lives, many many lives, through the extensive and growing reach of their organizations.

I wrote this document on vitamin D and am including the full text here:

Vitamin D Dosing and Levels
nmoL - units used to measure D most places in the world
ng/mL - units used in the US
** Please be sure to pay attention to the units given on your lab report.
** Quest Labs -problems remain: at this point in time, it still appears that 25(OH)D
results from Quest need to be divided by 1.3. to obtain results normed to the gold standard.
See vitamindcouncil.org, grassrootshealth.net for further information.

What should my vitamin D level be?
see below for information on various vitamin D levels........

❍ 32 ng/mL (80 nmoL) is the bottom of the current reference range. Still
leaves us in a state of substrate starvation which isn't good. And if Quest** did
your test - see note above - you need to divide by 1.3

❍ 40 ng/mL (100 nmoL) the minimum recommended by currently by
any major D researcher (see grassrootshealth.net).

❍ 50 ng/mL (125 nmoL) is the point at which we have sufficient substrate
for managing calcium levels and have additional to use for other necessary
physiological functions - including gene expression (300+ other functions in our bodies)

❍ 60-65 ng/mL (150-162.5 nmoL) is reasonable number for which to aim.
It's the 'middle of the current reference range for the major US labs. European
and canadian labs are behind the times on this one and are still generally using
a much lower range.

❍ 80 ng/mL (200 nmoL) is a target number for some researchers and is still
within the range of a physiological range of what we could achieve from sun -
ie a physiologically appropriate level.

❍ 100 ng/mL (250 nmoL) is a typical serum level of 25(OH)D obtained by lifeguards,
in South Florida, from sun only, implying that this is a very physiologically normal -
possibly optimal? - number for which to aim.

❍ 200 ng/mL (500 nmoL) is the lowest blood level of 25(OH)D at which there
has been documented D toxicity. There has never been a case reported at levels
lower than that.


☑ 1000 IU (25 mcg) per 25 lbs body weight per day is a very reasonable dose of
D3 for someone who
→ works indoors midday
→ wears clothes midday
→ avoids sun midday
→ wears any sunscreen midday

☑ 10,000 IU-50,000 IU vitamin D3 is produced in the skin upon full body exposure
to sunlight......with the average of the studies being about 20,000 IU. However,
do not take more than 1000 IU per 25 lbs body weight per day without periodic
testing of 25(OH)D levels. Just because it's physiologically normal to PRODUCE
10,000-50,000 IU in the skin, doesn't mean it's physiologically normal to TAKE
that much orally. Test a couple of times per year. And maybe double that the first
couple of years.

☑ Don't be afraid to take as much D3 as is required to raise your serum 25(OH)D to
50-100 ng/mL (125-250 nmoL) There is a 25-50% variation in serum
vitamin d levels at 'x' amount of supplementation rate due to genetic variations
in vitamin d binding protein.

☑ Early AM and later afternoon sun exposure on face, hands and arms is not sufficient
to raise vitamin D levels or maintain optimal vitamin D levels.

☑ Fall, Winter and Spring sun exposure is not generally sufficient to raise viamin D levels
or to maintain optimal D levels.

☑ A tan does not necessarily indicate sufficient vitamin D levels. It's easy to tan from UVA
without getting sufficient UVB to raise D levels.

☑ A person (tan or not) who's been getting
→midday
→unprotected
→summer exposure
→on most body skin
to the point just before a burn occurs, may have optimal D levels during the summer.

☑ The Vitamin D Council (vitamindcouncil.org) has all of the D research, reference cites
and links to peer reviewed journal articles that you'd ever want to read, plus several
thousand extra

☑ Grassrootshealth.org has a tremendous amount of good information as well.

☑ Stanford and other major D research centers have podcasts in iTunes that are excellent resources.

[maba]

Sorry to hijack the the thread Fairy Maba, I read about your midwife choice but didn't realize it was for a hb....both of mine were born at home. Pretty much right here where I am now

K

@Cillakat, it's going to be a hospital birth. CNMs don't do homebirths in PA, where I live.

[FairyRae]

SCD is a little unnecessarily complicated. I guess the nice thing for some is that it allows them to eat otherwise offlimits foods - but b/c of that, there are also a huge number of people that aren't successful on it.

best to just have her go primal from the start - grain free sugar free - as is your intention.

Would you elaborate more on SCD being unnecessarily complicated?

Grain free sugar free--do you mean fruit free (and legume free--which is the primal way ) too? Or just free of all sugar sweeteners (including or discluding honey?) Do you also mean really low carb and potato/starch free as well? Just wondering!! I'd love to hear more on thoughts about this. I've thought about doing SCD/GAPS for myself and my son, but haven't yet... I DO still eat tubers and starches (arrowroot) and don't really want to cut them out...

I guess what I'm asking is, for healing, what *you've* found to be necessary to do that might veer off from the SCD (and be less strict)? Hope that makes sense!

Thanks for your opinion on primal defense, and the link to your comparisons--I'm going to check it out now!

[FairyRae]

Bump

Cillakat, if you're reading this I'm still really interested in your elaborated thoughts on SCD (my questions are in my last post). You seem to have done lots of healing and I'm continually working on healing, esp. for my son who has multiple food sensitivities...I'd just love to read more of your (detailed) thoughts on all this!

Thanks again!

[cillakat]

Cillakat, if you're reading this I'm still really interested in your elaborated thoughts on SCD (my questions are in my last post). You seem to have done lots of healing and I'm continually working on healing, esp. for my son who has multiple food sensitivities...I'd just love to read more of your (detailed) thoughts on all this!

Thanks again!

Would you elaborate more on SCD being unnecessarily complicated?

Since there is really no benefit to consuming sugar - even when it's a monosaccharide - and there are definitely significant risks, I think it's extremely unfortunate that she leaves in sugar. There's also little doubt that baking almond flour and starches into all sorts of treats as regular part of the diet isn't ideal and may slow the healing process considerably. Most folks with major gut issues have other *major* issues as well. No doubt SCD is helpful for many - but it also has a very high failure rate, I believe, in large part because it allows the continued use of various flours and honey.

Grain free sugar free--do you mean fruit free

Not necessarily. Most seem to do fine on some level of fruit consumption - esp when the more sour fruits are used

(and legume free--which is the primal way ) too?

Sure Though I love legumes so that's tricky for me. But yes, I would agree that in ANY prehistoric diet, havesting enough legumes out of which to make a meal for a group of people just wouldn't have been possible.

Or just free of all sugar sweeteners (including or discluding honey?) Do you also mean really low carb and potato/starch free as well?

Free of sweeteners. Absolutely free of processed starches ike arrowroot/potato starch) though the occasional whole tuber is not likely to be a problem.

In short, I think the SCD should be TPB

You'll be amazed though but how much resolves just with four things:
1)sufficient vitamin d or sun exposure to maintain 25(OH)D levels between 50 and 80 ng/mL (per labcorp or zrt - not quest).....and it's alot more D supplementation or sun than folks realize.
2)enzymes
3)probiotics
4)a grain/sugar/flour free diet with little starch (unlimited veggies....mostly well cooked/pureed if there are serious serious gut issues)

For better or worse, I found that once I was off grains for while and getting plenty of vitamin d that all of my food intolerances and chemical sensitivities went away. Everything. Eventually I could eat sugar grains too - with no digestive distress. Eventually other problems of grain and sugar consumption caught up - ie weight gain, skin aging more quickly than it did on veggie carbs. And finally, after a couple of years of being lax on grains/sugar, I did have a spot of eczema that developed on my hand and was intractable. Then finally symptomatic GERD. I started PB when that happened.....but really, I was just going back to what we did 7 years ago, before the PB was around.

Vitamin D. Huge.

K

[FairyRae]

In short, I think the SCD should be TPB

LOL. THANK YOU for the details!! This is really all about my ds, who, even w/ a pretty restrictive elimination diet, and MANY steps taken for gut healing (including whole food probiotics, supping various vits/minerals--although NOT enough vit D which I think is an area to really focus on now, healing and nutrient dense foods like bone broth and liver etc, along w/ alternative treatments like homeopathy and acupuncture and chiropractic, etc) he is STILL losing foods, and having reactions. Ugh. He's had very strong reactions to all enzymes and probiotics I've used in the past as well, which may have been more of a die-off reaction than anything else, but it was really terrible to go through. (I thought he was reacting to trace corn in the enzymes at the time...)

[QUOTE}You'll be amazed though but how much resolves just with four things:
1)sufficient vitamin d or sun exposure to maintain 25(OH)D levels between 50 and 80 ng/mL (per labcorp or zrt - not quest).....and it's alot more D supplementation or sun than folks realize.
2)enzymes
3)probiotics
4)a grain/sugar/flour free diet with little starch (unlimited veggies....mostly well cooked/pureed if there are serious serious gut issues)[/QUOTE]

I find it hard (emotionally/mentally, for him) to cut out the foods he can eat w/out reacting (like rice cooked in bone broth) that he really really LOVES, when he needs to avoid all nuts, seeds, and those things you'll find in SCD that they make so many substitute foods out of. We eat a very primal diet anyway, but his dad still eats grains and so he wants them too--he probably still eats grains 3x a week. I think with some more creativity and organization I can do this. I just need to get myself focussed enough and DO IT! Glad to read your stance on sugar, along w/ the issues w/ the SCD--it makes sense. (And River reacts to gluten/dairy/soy/corn/most nuts/seeds/oranges/strawberries and chocolate, so many of the foods he needs to avoid anyway are unprimal or may harm gut healing, so in some ways it's not a big stretch to go fully primal.) Not sure if I'll be able to do this with him right away, but I'll def. start by upping his vit. D and retry the enzymes, and start up the probiotics again (not just the whole food kind.) Cutting grains out totally doesn't seem all that hard since he doesn't eat them often anyway, but all sugar/honey is a bit more daunting...I'm going to work on it though, and I GREATLY appreciate your input and shared experience!

For better or worse, I found that once I was off grains for while and getting plenty of vitamin d that all of my food intolerances and chemical sensitivities went away. Everything.

That is *very* motivating!! You don't see that much, even in SCD testimonials. Thank you again for your input, it's been VERY helpful. Ds's doctor is really willing to work w/ us (and will try and get insurance to pay for whatever we need), so maybe the first thing I'll do is try and get a vit. D test--I'll start supping more either way though!!

I may come back to ask you more--sorry to go so off topic of this original thread, although I think all of this applies to my hubby w/ fibro as well!!!

[cillakat]

D is the cornerstone - it really probably won't get better in any kind of fundamenal way until you get that fixed.

D testing options.
① See your doctor for testing if they use LabCorp

② D Action study using ZRT's home test- grassrootshealth.org

③ ZRT's test ordered from vitamindcouncil.org

ZRT will donates $10 to that worthy organzation.

④ ZRT's test can be ordered directly from ZRT

⑤ Quest/LabCorp testing project. Test on the same day using Quest and LabCorp -

get reimbursed for up to $100 of your cost

⑥ $60 LabCorp walk-in LabCorp test: http://www.privatemdlabs.com/lab_locations.php

⑦ LabCorp via LEF: non-members $62.67 each members $35.25 each

[FairyRae]

I was reading through your breastfeeding/baby nutrition doc, and see that you rec. very low levels of vit A (which makes sense as it could deplete the stores of D when taken too much--right? But does the form of A in a multi matter--retinol vs beta carotene?) Is there any multi you are aware of that has a lower/low enough amount of vit A (that would be good for someone dealing w/ D deficiency? I personally utilize a multi to get the Bs, C, E, zinc and selenium specifically, then supp w/ mag and fish oil and D as well. I don't like taking lots of stuff though and would love to be able to take a multi still...Ds doesn't do a multi as I haven't found an allergen free one that is chewable--he will NOT swallow pills yet--he's 3, and we've tried. The mercola one looks like it would meet his needs, but not sure if the vit A level is too too high--1000 IUs from beta carotene I think.) Alternatively, could one take a multi AND raise the vit. D amount they are taking in accordance w/ it?

Just really interested in your thoughts on this! Thank you again for all of your input! D deficiency is something I've thought about a lot and never fully looked into irt my ds's sensitivity issues...I've been doing lots of reading on the vit D council site--tons of info there!

[Gwynn]

Just bumping to see how everyone is doing, and if anyone has anything they would like to add!

Thanks,
Gwynn