Re: CFS /SCD Question for W.

[Guest guest]

Hi, I was diagnosed with fibro too, but I believe it was just

undiagnosed/misdiagnosed celiac. I think it takes a long time for us

to come out of so many years of chronic pain and damage done to our

bodies. The reason we feel better initially is that we have taken an

overall load off of our bodies. But, I have noticed that certain

things make me hurt more, like nightshade vegetables, such as

eggplant, tomatos make me have more joint pain. Also, beef doesn't

seem to do well for me either. The yeast thing plays a major factor,

and seems to take a " long " time to get under control. Did you ever

have the MMR? I think this must have an effect on us too, from what

I have read.

So many things play a role. I noticed about a week before my

periods, I am much more stiff. I am going to try a hormonal

balancing cream when I get done nursing to help with those issues.

Arbonne makes one, assuming it is legal. I have to find out about

that, but since it is a lotion, I assume it is. It is all natural

and supposed to help lots with fibro, arthritis, fatigue, etc. I

think hormones play significant role somehow, the overload of

estrogen especially.

Do you drink fresh juices? This has helped me lots, and I eat salads

with both lunch and dinner. I try to drink lots of water too, but

don't always. I teach stretch and relaxation at the YMCA, like Yoga,

and that helps to stay moving and not get too stiff.

The diet does definitely help, but I just think, like I said, the

damage is so deep, and the gut bugs so plentiful, and the body so

messed up from so many years, that it just takes longer to get under

control. But, I praise God I am med-free and can sleep well at

night, and feel better than ever before. I had all the same symptoms

as you are describing, along with Crohn's at 21, so I know about it.

And yes, the diet with minor variations, nothing illegal, is very

important and crucial to healing. hang in there. Do the juicing,

possibly juice fasting will help you too. Also, cod liver oil daily,

eating lots of canned salmon helps, extra Vitamin C, and I have been

taking glutamine amino acid powder from Freeda. I think it is

helping with leaky gut, which is a main underlying issue with all

this.

Tina

>

> Hello ,

>

> I noticed on your posts that you have CFS, and I was hoping you

> wouldn't mind a couple of questions for you regarding CFS and SCD!

>

> We started the SCD for my 14 yr old son (Regulatory Disorder,

Sensory

> Integration Issues, Explosive/Raging Behav...). He has been on it

> for 6 months and by about 4 months, we were really starting to see

> remarkable progress (significant reduction in rages, new pleasant,

> chipper mood almost all day!, much better at problem solving, doing

> much better academically, socially, etc.).

>

> I went on the SCD 8 months ago to provide moral support for my son,

> and because my gut yeast levels were also high (Arabinose Test). I

> was hoping it would help me to recover from 14 years of Chronic

> Fatigue Syndrome (which I think I ended up because of 5 months of

> untreated Giardia, and then having swallowed some mercury in a

broken

> filling while pregnant), Fibromyalgia, Irritable Bowel Symptoms...

>

> We both did the intro for about 4 days. I was starting to see

slight

> improvements in my health (less irritable bowel symptoms and

stamina

> building a bit...), to the point where around the five month mark

> (July), I had 8 days where my " Average Daily Energy " was up to 70%

> (of my energy level BEFORE CFS). This is remarkable for me - in

the

> past 14 years that I have had CFS, although I've had a few peaks

here

> and there, I don't remember ever peaking that high for that long.

I

> was very excited, thinking this diet had really helped me turn a

> corner. However, since those beautiful 8 days, my stamina has

really

> regressed.

>

> We just started the yogourt (cashew milk) a month ago. I hoped it

> would give me a boost, but my energy has dropped some more, pains

> levels are up, and now I have an exzema rash on my face that was

not

> there before. Of course I am hoping this additional regression is

a

> sign of die-off. I am thrilled beyond belief by my son's progress,

> however am trying to sort out why I don't seem to be making as much

> progress.

>

> I was wondering if the SCD has helped improve your stamina much,

and

> if so, how long it took to kick in. Do you feel after being on it

> for 18 months that it has been worthwhile for you as well, and that

> it is helping you to recover from CFS?

>

> Thanks so much for any information you can pass on!

[Guest guest]

Did you ever

> have the MMR? I think this must have an effect on us too, from

what

> I have read.

Hi Tina, I don't think I had the MMR, although I might have had a

single measles shot in my early twenties (~1987?) - I have a vague

recollection of this from when I was working at a hospital, but can't

seem to find my records anywhere to see if I really had a measles

shot - might have just been a TB shot.

> Do you drink fresh juices? This has helped me lots, and I eat

salads

> with both lunch and dinner. I try to drink lots of water too, but

> don't always.

My CFS medical doctor had recommended a juicer, but I found it made

such a mess, and took so much time and work after to clean everything

up, that I felt it was taking more energy from me than it was giving,

so I gave it away! Instead, I make fruit smoothies in my blender -

really enjoy those - and I can just toss the blender in the

dishwasher.

I do try to drink a lot of water - my doctor explained that I

have " neurally mediated hypotension " (very low blood pressure), and

so I must drink a minimum of 2 litres of water a day. I also take

1/2 tsp of Kosher salt with each meal to help boost my blood

pressure. I really notice a drop in stamina if I don't keep up with

the salt and water loading protocol.

I was also taking a high dose of Natural Factors ESTER C, but was

having a hard time sorting out if it is legal or not. When I was on

it, it made a huge difference in terms of eliminating cold and flu

viruses (1 in 12 months vs. 11 in 12 months when I wasn't on it!).

I, too, was thinking after all these years of damage, it must take a

long time to heal. Even though I don't seem to be making the stamina

progress I was hoping for, I do want to stick with SCD - I was a

sugaraholic before this, and now my conscience feels SO much better

about what food is crossing my lips. I'm doing strict SCD, so I feel

so good about not eating any additives, preservatives, processed

ingredients, etc. Now that I'm so acutely aware of all that extra

junk, I'm amazed at how much pure garbage I was eating, even though I

thought I was making healthy choices most of the day - the times I

made the unhealthy choices really were adding up by the end of the

week! One of the ways I stay motivated on this diet is by changing

the way I observe people eating junk food: while I watch them,

instead of thinking of the treat as a WHOLE, I visualize

the " ingredients list " that is crossing their lips and what effect it

will have on their body. So now instead of thinking, " Oh, look at

that treat that they get to eat! " , I think " Oh, gross! "

It would, however, be encouraging to hear from someone who has

recovered from CFS on the SCD. I did a search on the SCD adult

websites last year to look for CFS references, but didn't find much

at all.

Thanks for your encouragement!

[Guest guest]

>

> Hello ,

>

Not at all! People have to try to shut me up these days because I'm

so excited about my progress. The 1st 9 months were the worst for me

and I was largely housebound, with all symptoms worse, resting most

of the day. But, like you, there were enough signs to let me know I

was on the right track - improved colour in BMs, and consistency at

times, far less nausea and actually feeling hungry rather than empty.

That was all the die-off.

Gradually there were glimmers, maybe a day or so, then getting

longer, when I began to feel better and very positive but nothing

consistently remarkable until around 9 months. I was ravenously

hungry and ate TONS of protein. Then I began to feel better and

notice changes like hair regrowing on my temples where it had

thinned, toenails growing straight not ridged. At 1 year I was still

very underweight (6 1/2 stone having been 7 stone 5 before the diet)

but slowly weight began to creep up. Now I'm a massive 7 stone 11

which is more than I weighed before I got CFS 11 years ago. I still

have the CFS symptoms, but they are all improving. It took a long

time for energy levels to improve and I didn't do too much anyway

because I didn't want to lose any more weight and overdoing things

seemed to cause my bowel to flare anyway. At 1 year I felt well

enough to travel for the 1st time and by 15 months began to notice

energy levels significantly improving. Right now I reckon I am at

the level I was at around 7 years ago at least. I hope soon to start

driving again.

I must add that at 1 year we consulted a doctor/nutritionist here in

the UK who uses SCD to treat children (she cured her own son of

autism). This was because we were convinced by my progress that SCD

was right for our son, but felt we needed more support. She

recommends a therapeutic soil bacteria probiotic to agressively

repopulate the bowel. I felt it was right to change to this and both

my son and I are on it. We also do fresh vegetable juices (supports

the liver, digestion and speeds up the detox) and a lot of bone stock

as it is so healing and cleansing. We also take certain oils

including cod liver. Personally I think I maybe could have made

quicker progress had I started the chicken soup earlier, but I was

very nervous as even one dessertspoon caused awful D. Now I know

that was because my toxic level was so high. Now I can tolerate a

bowlful.

This diet has already cured me of travel sickness, sleeplessness and

rhinitis which I had since childhood (I'm 43) - I believe now I had a

bad bacterial balance inherited from birth plus carbo-rich diet until

starting SCD 18 months ago. Incidently this is why my son, 7, has

had problems (colitis + ADHD) so early - because he inherited an even

worse bacterial balance from me.

I am impressed that you went on the SCD to support your son. I am

convinced it is the right way but it can take time as the body has

been labouring under such burdens for so long - there are a lot of

toxins to be released. I am finding it awesome to feel my body

recovering after all these years. Your energy levels going down and

the eczema seems to point to me towards your body trying to cope with

more die-off.

Please feel free to email me personally. I would LOVE to spend more

time on this site - I find it all so interesting - but I simply don't

have time. Hope this helps. I'm glad to talk to somebody else with

CFS!

Incidently I have a friend who recovered from CFS and her

fibromyalgia is currently improving still more on a supplement called

guai. If you are interested I could find out more.

W

colitis 25 years/CFS 11 years

> I noticed on your posts that you have CFS, and I was hoping you

> wouldn't mind a couple of questions for you regarding CFS and SCD!

>

[Guest guest]

" She recommends a therapeutic soil bacteria probiotic to

agressively repopulate the bowel. I felt it was right to change to

this and both my son and I are on it. "

I just want to make sure that everyone is aware that these soil

bacteria are NOT recommended by Elaine and are not part of the

standard SCD protocol.

Each individual has the right to choose whatever works for

his/her personal situation. But I do want to make sure that

everyone knows that Elaine recommends only Lactobacillus

Acidophilus as a probiotic supplement.

Jody

mom to -5 and -8

SCD 21 months