New doctor visit, wow!

[Guest guest]

First, sorry I haven't been on much lately. Between

the doctor visits, cooking and trying to catch up on the housework set

aside to spend 21 out of 30 days last month with in hospital I'm

struggling. Add to that the 10 day migraine that just (hopefully)

disappeared last night and I'm feeling lucky to be functional!

Wednesday I met with my Nurse Practitioner at the new office I mentioned

before. She works together with the doctors and since getting in to

see them as a new patient holds a 2 year waiting list, I thought I'd see

her first. I'm so glad I did. This woman was

spectacular. Before coming in I filled out an 11 page questionaire

and then I sat with her for a 90 minute chat where we went deep into my

medical history. She agrees that our diet is amazing and ordered so

many tests I'm confident that she's going to have a full picture of

what's happening. Not only did she order every thyroid and thyroid

anti-body test, she also ordered every toxicity test, hormone tests,

gah! On top of that she ordered a stool test that.. once I got

beyond the fact that it was a " stool " test I was wishing we all

could get it! It's called a Comprehensive Digestive Stool

Analysis/Parasitology test. I found a short description: This

test evaluates digestion and absorption, bacterial balance and

metabolism, yeast and immune status for patients with irritable bowel

syndrome, indigestion, malabsorption, and other GI-related problems.

Additionally, Genova offers a parasitology component with the CDSA test

that evaluates for parasites using microscopic examination and EIA

testing. Amazing right? She also ordered a

Neuroadrenal profile. It tests the levels of Epinephrine,

Norepinephrine, Dopamine, Serotonin, GABA, Glutamate, PEA, Histamine,

Creatinine, DHEA and Cortisol X 4. I mean, I feel like I'm being

turned inside out and I'm sooo excited! It was worth the dozen

vials of blood I donated to the lab vampires!

She sent me home with directions to begin some additional

suppliments. I have added fish oil, L-Glutamine and Adrenogen (for

the ol' kidneys) to my multi-vitamin and my b-complex.

Yummy!

sees his Doctor at the office on Tuesday and I'm sure will have

many of the same tests ordered. He's already started on the

additional suppliments recommended to him and the LDN prescribed to him

from the doctor when he met in the hospital. He's not taking the

Adrenogen, but he is on a digestive enzyme. I want to ask about

Alpha Lipoic Acid when we meet his doctor. has been taking

the LDN for a few days now without any vivid dreaming, although he said

he had trouble sleeping last night. He isn't big on giving Mom many

details, but he did say he's starting to feel " better. "

Any better is good in my book. I'll let you know how it

goes. I'm also going to see what this new doctor thinks I

should do about the resistant GI. I'm either firing him totally or

keeping him on the sidelines for colonoscopies if he's willing.

Hubby has asked for me to start making enough yogurt to share with

him!!! This is HUGE. He was my biggest obstacle in starting

this diet and was so resistant. Now he's a believer... although he

still has non-scd outside of the house. He's never had bowel

issues, so what can I say. At least he's thinking about eating

healthy foods. There was a time I could not get him to eat fruits

or veggies, now he snacks on fruit daily. It's

awesome!

I know I promised the muffin recipe and I'll post it as soon as I find

it. It's hard to describe how behind you get when you've been gone

for weeks, then come home with a migraine for another week. I

managed to cook and do some basics, but that's it. I'm feeling

better so the recipe will surface soon!

Love to you all,

Rhonda UC, Kidney Disease (likely PKD)

Son, 17, CD

Starting 6th month SCD, YAY!

[Guest guest]

Great news Rhonda.Be careful with L-glutamine - it causes some people symptoms likecramps, though works great for others. Glad to hear isdoing better and your husband is finally on board.MaraFirst, sorry I haven't been on much lately. Between the doctor visits, cooking and trying to catch up on the housework set aside to spend 21 out of 30 days last month with in hospital I'm struggling. Add to that the 10 day migraine that just (hopefully) disappeared last night and I'm feeling lucky to be functional!

[Guest guest]

Thanks Mara,

They told us to watch for symptoms and if we had any to lower the

dose. So far we're not having any negative reactions

though.

Rhonda

At 05:19 PM 11/7/2009, you wrote:

Great news Rhonda.

Be careful with L-glutamine - it causes some people symptoms like

cramps, though works great for others. Glad to hear is

doing better and your husband is finally on board.

Mara

First, sorry I haven't been on much lately. Between the doctor

visits, cooking and trying to catch up on the housework set aside to

spend 21 out of 30 days last month with in hospital I'm

struggling. Add to that the 10 day migraine that just (hopefully)

disappeared last night and I'm feeling lucky to be

functional!

[Guest guest]

So pleased for you Rhonda!

Ugh- I used to have killer migraines…I hope you have some

meds for those.

Sounds like you & are in good medical hands. And Hubby’s

on board too – way to go!

Carol

[Guest guest]

It seems trivial with the UC and the Kidney disease, but in

terms of quality of life, those migraines top my list of things I want

figured out. They're getting worse again and I'm

terrified.

Rhonda

So pleased for you Rhonda!

Ugh- I used to have killer migraines…I hope you have some meds for

those.

Sounds like you & are in good medical hands. And Hubby’s on

board too – way to go!

Carol

[Guest guest]

Be careful with L-glutamine - it causes some people symptoms likecramps, though works great for others. Another thing about the L-glutamine is it always made my liver enzymes go through the roof. Also, on my bottle it actually warned people with liver problems to be careful taking it, so I guess it's not just me. Just something I thought I'd mention, so if the liver enzymes go up you know what might be the culprit! =) Glad you guys are doing better though! Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

20 or so years ago I had a doc who told me my migraines were

hormonally related and would cease once I went through menopause. He was

correct. I think I took phenabarbitrol (sp?) for them, but if I did not get the

med into me at the onset of the migraine, I would vomit & have D

concurrently. That always posed the problem ‘which orifice gets the

toilet first?’ (sorry to be gross). I hope you can find something that

works for you.

Carol

CD 21 yrs SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Rhonda

Roman

It seems trivial with the UC and the Kidney

disease, but in terms of quality of life, those migraines top my list of things

I want figured out. They're getting worse again and I'm terrified.

[Guest guest]

i was on it 3 times a day for a year no liver problems but everyone is different

-I didn't feel a difference when swallowing it like some do -but I think it

helped me heal and start to have more good moments, maybe????

eileen 21 months scd

>

> > Be careful with L-glutamine - it causes some people symptoms like

> > cramps, though works great for others.

>

>

> Another thing about the L-glutamine is it always made my liver enzymes

> go through the roof. Also, on my bottle it actually warned people with

> liver problems to be careful taking it, so I guess it's not just me.

> Just something I thought I'd mention, so if the liver enzymes go up

> you know what might be the culprit! =) Glad you guys are doing better

> though!

>

> Peace =)

> Alyssa 15 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> No meds!

>

[Guest guest]

>

> i was on it 3 times a day for a year no liver problems but everyone

> is different -I didn't feel a difference when swallowing it like

> some do -but I think it helped me heal and start to have more good

> moments, maybe????

Quite possibly it was great for you. Some people swear by it.

It definitely caused me intestinal cramping. Though I was in a flare at

the time. So occasionally I wonder if it would be more helpful now.

Haven't tried it again yet though.

Mara

[Guest guest]

I've heard the same, however now my hormone levels have me

at post menopausal (at 46!) and the migraines persist. I keep

hoping that maybe when I'm more post menopausal... LOL. As for the

yeast connection, I'm being tested for yeast levels and will be talking

to the doctor about it on my next visit. I think I'm all out of

balance in every sense (migraines make me wobbly) and I'm looking forward

to learning how to get myself back in balance. I know this diet is

a super first step. My solution to the orifice choice... keep a

bucket in the bathroom.

Thanks for the concern ladies... I woke up a few times last night with

that nasty migraine making it's way back so we'll see how the day

goes.

Rhonda

20 or so years ago I had a doc

who told me my migraines were hormonally related and would cease once I

went through menopause. He was correct. I think I took phenabarbitrol

(sp?) for them, but if I did not get the med into me at the onset of the

migraine, I would vomit & have D concurrently. That always posed the

problem ‘which orifice gets the toilet first?’ (sorry to be gross). I

hope you can find something that works for you.

Carol

[Guest guest]

> I've heard the same, however now my hormone levels have me at post

> menopausal (at 46!) and the migraines persist.

I'm also 46 and have struggled with hormonal migraines. My ND gave me a cream

for " Progonal " , which is a wild yam extract (natural progesterone). It works

really well and as long as I use it like I'm supposed to I don't get migraines

at all - sometimes not even headaches around my period. It's not expensive

either.

Liz