Re: Re: BAD BLOOD WORK RESULTS - please help

[Guest guest]

>

>>

>> My daughter has been on the diet for 3 months and has been feeling

>> great - no blood, no cramps.......all good. Her energy level is

>> great. However, we just got bloodwork back and everything is worse!

>> Her sed rate (inflamation rate) went from 25 to 37 (normal is 0-20).

Is that the same as c-reactive protein level, which also measures

inflammation?

http://www.webmd.com/a-to-z-guides/c-reactive-protein-crp

If not, find out what that rate is.

Mara

[Guest guest]

I had the same result with both my CRP and sed rate.Both had dropped to normal range and then at month 3 they both skyrocketed.I think it's the 3 month flare people talk about. I'm going to have a 5 month test done to see if they're down again. I feel like they're down. I'll let you know, don't get discouraged.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: Tapering Prednisone for PG

To: BTVC-SCD Sent: Friday, December 12, 2008 12:12:21 AMSubject: Re: Re: BAD BLOOD WORK RESULTS - please help

> >>>> great - no bloMy daughter has been on the diet for 3 months and has been feeling>> od, no cramps...... .all good. Her energy level is>> great. However, we just got bloodwork back and everything is worse!>> Her sed rate (inflamation rate) went from 25 to 37 (normal is 0-20).Is that the same as c-reactive protein level, which also measuresinflammation?http://www.webmd. com/a-to- z-guides/ c-reactive- protein-crpIf not, find out what that rate is.Mara

[Guest guest]

Hi Kathy,

Sorry to hear about your daughter. I am just posting because I've

been having problems with anemia since pre-SCD. This post is not

meant to offend anyone--just my experience. No medical background

here either.

You can get only a hemoglobin test. Most doctors do a full panel though.

Anemia can be hemoglobin or total blood. At least they give you

plasma or full blood.

The day before Thanksgiving, I had to get full blood or plasma (not

sure if those mean the same thing the doc said my hemoglobin was 3.0).

I went to the ER because I couldn't breathe. I had a cough--nasty,

awful chest cold and couldn't breathe. Not the first time I've had to

go to the ER to find out I was anemic. Until it gets to a point, I

didn't know anything was wrong--not that wrong.

I would do the opposite of other advice and really, really keep an eye

on the blood count. Keep it tested and do what you have to in order

to straighten it out. Nothing worse than having to continually go to

the ER or (I'm thinking if I had been a kid) to sit there telling

someone which arm and vein while they keep busting every other vein in

your hand and arms trying to find a good one. Not fun--especially

while I keep " gently " trying to direct them to the right place. Plus

no energy is depressing and dangerous.

Chicken liver is good--mix into meatloaf to cover it up if she doesn't like it.

If you have to (I think 8.0 is transfusion level so you don't want to

go there) then take multi-vitamins or iron supplements or whatever

your doctor says. I just started www.repliva.com so I'm praying it

works. I know they aren't legal on the diet and it goes against

everyone on here but the alternative is worse. I heard about Repliva

from someone on the SCD for her daughter I think.

Debbie 39 cd

scd 12/05 originally

[Guest guest]

Jodi, I know you would never tell someone not to listen to the doc.

It was intended for KathyUC. The doctors focus on the whole blood

panel or they wouldn't know to give just red cells or plasma or

whatever.

Staying fanatical SCD is key I agree. Within that, there are things

you can't tolerate or may not be able to tolerate like too much nut

flour. I can't eat liver every day. Just can't do it.

Cooking in cast iron is supposed to help a lot also. Someday I'll get

cooking the dried beans down, that will help.

Don't read into anything I post on iron. You know that's been an

issue since about 2004 for me. It has absolutely nothing to do with

your post which I thought I cleared that in the first sentence. It's

not part of SCD if you take supplements which is why I gave up saying

I'm SCD--technically I'm not even if I were :-). So I probably took a

wrong turn back there on that issue. It's medically necessary.

Everyone else takes there meds without compounding and remain SCD.

Should be the same with iron.

DAO

[Guest guest]

At 07:58 PM 12/11/2008, you wrote:

It's not part of SCD if you take

supplements which is why I gave up saying I'm SCD--technically I'm not

even if I were :-). So I probably took a wrong turn back there on that

issue. It's medically necessary. Everyone else takes there meds without

compounding and remain SCD. Should be the same with

iron.

If supplements are not permitted on SCD, then I'm not SCD, either -- and

neither are most of the folks on Pecanbread. Elaine used a minimalist

approach on supplements partly because it's so hard to find quality ones,

and partly because she knew it would be difficult to gain acceptance for

such a " radical " diet without being labeled a crackpot

vitamin-pusher, too.

In point of fact, there's a supplement which I use which prevents muscle

spasm in my back. Prior to its discovery, I was taking codeine 2-3 times

a week, and spending most of my time in a narcotic fog.

The supplement is not SCD legal.

I discussed the issue with Elaine, what my options were, and so forth,

because I did not want to derail myself right at the start of the diet.

Her thought was the benefit derived from NOT being on the codeine far

outweighed the problem of the illegal supplement, but she did warn me

that I would probably take longer to heal because I was continuing to

potentially feed the bad bugs. That has proved to be the case.

So, if you require the iron supplement, no, it's not a good thing, and

it's probably helping feed the bad bugs. You'll need to be that much

stricter about everything else you do. (Anyone think I really ENJOY

peeling and juicing all those frippin' tomatoes for sauce?!)

But you're still SCD. And I hope you find healing enough that one day you

won't require the iron. Oh, yes. If you can afford it, ostrich is a top

mark red meat which tastes something like veal (which I don't eat on

general principle), and which is great for rebuilding your blood. My

surgeon had two units of blood on stand-by for my cancer surgery. I

needed neither one.

—

Marilyn

New Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Thanks for the support Marilyn. When I started SCD, I couldn't

maintain food. I was up by 3am and back asleep by 9am--exhausted.

For some reason (and I am going mainly by the fact when I started I

couldn't even maintain food) that a solution will be found for the

iron problem.

Just have to keep trying like anything else :-).

Debbie 39 cd