Newbie questions

[Guest guest]

Those Two wrote:

> Hi Dion,

>

> It sounds like you had a EGM. What diagnosis did they give you? I was

> correctly diagnosed with sma II after an EMG in about 1970. Seems like

> they could gave a some kind of diagnosis as they put you through that

> dreaded test.

They told us simply that " The message telling the muscles to grow is

stopping at the spine. " I'm almost certain that we were given the

impression that I was a one-off.

--

Dion C. Detterer

Writer, philosopher, genius

Email: dion@...

Blog: http://thewhimwham.com/

[Guest guest]

Hello All,

Just a quick question. Im in week 2, day 12 of my challenge. Everything is going

really well. The scale went down 7 lbs in the first week and hasnt moved since.

But thats ok! I know Im following BFL the the T.

I have worked out in the past. However I did the BodyPump group exercise series.

Which were really intensive classes like Body Step, Combat (for cardio) and Pump

for weight. The premise is similiar to BFL in that it is interval training. When

I did those classes I also worked out 5-6 days a week, an hour each class. I saw

great results! Im trying it on my own now on the gym floor and hope I see still

the same results. I can never make it to the classes!

When I worked out in the past I never had this problem. I am noticing some

spotting. I am on the pill and not due for 2 more weeks. Im not pregnant, so we

can rule that out. Was wondering if this could be a by-product of the

food/exercise regime? May also explain why the scale hasnt moved.

Thanks all!

[Guest guest]

Hello All,

Just a quick question. Im in week 2, day 12 of my challenge. Everything is going

really well. The scale went down 7 lbs in the first week and hasnt moved since.

But thats ok! I know Im following BFL the the T.

I have worked out in the past. However I did the BodyPump group exercise series.

Which were really intensive classes like Body Step, Combat (for cardio) and Pump

for weight. The premise is similiar to BFL in that it is interval training. When

I did those classes I also worked out 5-6 days a week, an hour each class. I saw

great results! Im trying it on my own now on the gym floor and hope I see still

the same results. I can never make it to the classes!

When I worked out in the past I never had this problem. I am noticing some

spotting. I am on the pill and not due for 2 more weeks. Im not pregnant, so we

can rule that out. Was wondering if this could be a by-product of the

food/exercise regime? May also explain why the scale hasnt moved.

Thanks all!

[Guest guest]

I think you are starting early and the usual water weight gain at

that time of the month is what is making you stagnate on the scale.

No big deal. Just take your pill on time every day and keep

trianing. You're doing great!

-

>

>

> Hello All,

>

> Just a quick question. Im in week 2, day 12 of my challenge.

Everything is going really well. The scale went down 7 lbs in the

first week and hasnt moved since. But thats ok! I know Im following

BFL the the T.

> I have worked out in the past. However I did the BodyPump group

exercise series. Which were really intensive classes like Body Step,

Combat (for cardio) and Pump for weight. The premise is similiar to

BFL in that it is interval training. When I did those classes I also

worked out 5-6 days a week, an hour each class. I saw great results!

Im trying it on my own now on the gym floor and hope I see still the

same results. I can never make it to the classes!

> When I worked out in the past I never had this problem. I am

noticing some spotting. I am on the pill and not due for 2 more

weeks. Im not pregnant, so we can rule that out. Was wondering if

this could be a by-product of the food/exercise regime? May also

explain why the scale hasnt moved.

> Thanks all!

>

>

>

[Guest guest]

: Rewarding alpha may be causing your headache. If you are working at the temps because you have hot temporal lobes, I would suggest that you do a simple T3T4 2CSquish (15-35 Down), and leave the alpha alone. Rewarding alpha makes one more aware of physical sensations, and has a nasty way of making people more aware of their pain. Alpha is the bandwidth that is inhibited in the headache protocols, which are done at the temporals. You write that you have "very low alpha amplitudes." Alpha amplitudes are not typically assessed in the temporal lobes, but rather in the parietals. What are your alpha amplitudes at P3 and P4?

Hope this helps.

~Betsy

Newbie questions

After taking Pete's training last May, I'm finally getting serious about doing the Neurofeedback. (To bad I didn't do this when I actually remembered some things!) I'm training myself first before moving on to my bipolar son.

I've been doing a windowed squash, T3 T4 increasing 7-14 for hot temporals with very low alpha. I started out with just 5 min. per session because I had an abreation to this protocol during the workshop. After about 10 sessions, I'm up to 20 minutes. Seems to be working very well, but for the last two sessions I've developed a headache that doesn't seem to want to go away. Does this mean I'm overtraining? Should I do a session of AlphaTheta to correct this? Also, while training this, I get so relaxed/tired that I have great difficulty keeping my eyes open. Is this a normal reaction?

Finally, I'm now finding that I have great difficulty getting motivated to get anything done. So I tried a session of SMR% at C4 A2 12-15, but is just made my headache much worse. Any suggestions?

Thanks,

Funk

[Guest guest]

Good point - it's alphs surges that are signature for headachs. Deb Strawderman <straw856@...> wrote: : Rewarding alpha may be causing your headache. If you are

working at the temps because you have hot temporal lobes, I would suggest that you do a simple T3T4 2CSquish (15-35 Down), and leave the alpha alone. Rewarding alpha makes one more aware of physical sensations, and has a nasty way of making people more aware of their pain. Alpha is the bandwidth that is inhibited in the headache protocols, which are done at the temporals. You write that you have "very low alpha amplitudes." Alpha amplitudes are not typically assessed in the temporal lobes, but rather in the parietals. What are your alpha amplitudes at P3 and P4? Hope this helps. ~Betsy Newbie questions After taking Pete's training last May, I'm finally getting serious about doing the Neurofeedback. (To bad I didn't do this when I actually remembered some things!) I'm training myself first before moving on to my bipolar son. I've been doing a windowed squash, T3 T4 increasing 7-14 for hot temporals with very low alpha. I started out with just 5 min. per session because I had an abreation to this protocol during the workshop. After about 10 sessions, I'm up to

20 minutes. Seems to be working very well, but for the last two sessions I've developed a headache that doesn't seem to want to go away. Does this mean I'm overtraining? Should I do a session of AlphaTheta to correct this? Also, while training this, I get so relaxed/tired that I have great difficulty keeping my eyes open. Is this a normal reaction? Finally, I'm now finding that I have great difficulty getting motivated to get anything done. So I tried a session of SMR% at C4 A2 12-15, but is just made my headache much worse. Any suggestions? Thanks, FunkDeb Lefort MFTSomatic PsychotherapistLivermore, Ca. 925 243 9990dlefort@...

[Guest guest]

I agree with Betsy. Correct me if I'm wrong but, If you're doing a windowed squash, theoretically, you're letting the brain decide how to adjust itself, however, 7-14 is a fairly wide window. (inhibiting 2-6 and inhibiting 15 to 38 without a reward)and you are not really rewarding anything. If you are rewarding then it's not a windowed squash, and you may be going too low, too fast. The total relaxation state you describe that you get during training, may be just that, and if you're not used to being relaxed (hot temporals) you may be getting a rebound headache. In other words the brain is saying "what the heck !! .. what is this relaxation stuff anyway, this is kinda freaky... now get back into that worried state, and get there fast !!" = headache.

I'd return to a gentler training, ie less time, or real windowed squash, based on where your low-beta really is. And as Betsy said, if you're going to do alpha up, I'd start at P4 first, or P3/P4 if your assessment shows that. You might add some daily belly breathing or meditative moments for short periods of time. If you're (on the subjective, and objective) more of a "filtering type" I'd stay on the right side for a while.

I believe you're working with the sympathetic and parasympathetic balance and the sympathetic may in fact be relaxing or "going lower" than the parasympathetic which can give you a headache.

Tell us more about your assessment.

Hope this helps

[Guest guest]

Greetings, from the other side of the wet,

I was sent a Scoby when I started and it seems to work a bit like this...

Your starter is merely something you put into your brew to help it start to

work.

When mine arrive I got instructions to brew a large cup (I used a 1/2 pint mug)

of tea of your choice and add a desert spoonful of sugar (I think it's the spoon

your lot call a table spoon). All the time required before actually adding Mummy

Scoby is the time it takes to cool to room temperature.

You then add this brew, after a week or so fermenting it is at the right stage,

to your actual main brew. It will also have grown a brand new baby Scoby which

you can either add along with mummy or keep one to make another starter.

This way you can actually grow a dozen if you like, I'm up to three now

Apparently the main brew gets off to a better start with a little help. This is

done by adding the starter.

Some people will send you a Scoby and sufficient starter to do the trick. My

first contact did. Others send only the Scoby and you make your own starter, as

my second one did.

HTH,

TTFN,

Nn. England.

newbie questions

Hi everyone,

I am presently awaiting a scoby and have a few questions. I have been

reading about using 'starter'. What is starter, where do we get it, and

is it only for the first brew? I live in a remote area of Kentucky and

have not found any commercial kombucha anywhere. I have to drive a

minimum of an hour and half to shop at a mall. But I guess I could

order starter from the internet. (I wish shipping and handling did add

so much to such purchases.)

If the scoby arrives before I get starter will it be OK until then?

Thank you all for responses> Ellae

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[Guest guest]

Starter is simply acidic KT from the previous brew. You should add about

10% volume to make sure that your new brew is acidic enough to avoid mold

problems. The person sending you the scoby should send enough brew with

your scoby to get you started, however if they don't and some don't because

of the extra postage that shipping approximately 2 cups of liquid can add

up; not to worry. You can simply increase the volume of the KT that comes

with your scoby to an appropriate amount by adding distilled white vinegar

the first time. If you prefer using ACV (apple cider vinegar) then please

boil it first to make sure that there aren't any MOV (mother of vinegar)

bacteria alive to compete with your scoby. For each brew after that you

simply reserve two cups of the previous brew (I typically take mine off the

top before disturbing the scoby by using a ladle) to add to the new brew.

When adding your starter, you typically add it last and pour gently over the

scoby which is now in your tea mixture to allow it to form a barrier to

protect your brew from mold.

Live and Love Well,

Sandy

On 5/6/07, Artielle <tlhough@...> wrote:

>

> Hi everyone,

> I am presently awaiting a scoby and have a few questions. I have been

> reading about using 'starter'. What is starter, where do we get it, and

> is it only for the first brew? I live in a remote area of Kentucky and

> have not found any commercial kombucha anywhere. I have to drive a

> minimum of an hour and half to shop at a mall. But I guess I could

> order starter from the internet. (I wish shipping and handling did add

> so much to such purchases.)

> If the scoby arrives before I get starter will it be OK until then?

> Thank you all for responses> Ellae

>

>

[Guest guest]

Hi

Very nice of you to do this research for your colleague!

I don't have much time but will write down briefly what comes to mind.

My little one, Emma, just turned 2 and started having fevers at 11 months. From

what I've heard (lots of research on the net, doctors and this group), it is not

at all unusual for kids to start fevering before their first birthday. In

fact, it's pretty standard. is an auto-inflammatory disease. The body

thinks it's got some bad infection to fight (although there IS no infection at

all) and responds with high fevers and the other symptoms (mouth ulcers, stomach

pains, sore throats but negative strep tests etc, although a lot of kids don't

get all the symptoms). can NOT be tested for at all. It is a diagnosis of

exclusion. Meaning genetic testing for all GENETIC periodic fever syndromes

(PFSs) has to be done first (HIDS, TRAPS, FMF etc), and if they all test

negative, is often diagnosed. However, there are many many unknown genetic

mutations out there and it might after all turn out not to be . It is not

quick or easy to

diagnose and many patients never get a 100% firm diagnosis. We have ruled out

HIDS with our daughter and are thinking it is but there is no way of being

sure. We once thought that using prednisone is a way of diagnosing (i.e.

if it works, it's ), but have since learned that prednisone works for most

PFSs. Tell your friend to be VERY careful with using Prednisone on her child. If

she uses it every 14 days it's likely to show negative side effects later in

life. It is common for cycles to become closer together when using Prednisone,

and this is why a lot of families decide to discontinue its use. Tonsillectomy

is something that has shown high success rates to cure kids. However, as

it is almost impossible to be sure that the diagnosis is ever right, it's

a tough call to make to send your child to have surgery that might prove

unneccessary or not work in the end. We are seriously considering having Emma's

tonsils out this year

still, but there are many moms on this board who are hesitant to have this

done, and I can understand why.

is apparently outgrown by most kids by the time they reach 5 or 6 years

old. This however doesn't seem to be true for a lot of kids on this board. Maybe

they don't have after all or maybe only a certain percentage outgrow it.

What is most known about these PFSs, is that much is unknown and there are so

many exceptions to the rule! We're all feeling our way through this, many moms

have been living with their kids fevering for many many years. I try to take

things day by day and think positively. Emma is an extremely happy child when

she's healthy and she never picks up 'common' bugs really. This might be due to

the overactive immune systems these kids have.

There's so much more but this is all I can think of and I must run now.

Take care, best of luck to your friend!

Inga p.s. we live in South Africa so cannot help with recommendations for docs

inthe US but most moms here on the board are American.

___________________________________________________________

Want ideas for reducing your carbon footprint? Visit For Good

http://uk.promotions./forgood/environment.html

[Guest guest]

Thanks Inga for your reply to . What you had to say was also helpful to

me, but brings up more questions about my sons situation. It seems very unusual

to me that he was 10 years old when he started having fevers. Most children

diagnosed with started fevering before age 5.

I was told by s ID doc that because he responded so positively to the

prednisone...was a good indication of him having ...now I'm reading that

prednisone can have the same positive affect with the other PFS's.

I am wondering if you and others on the board think I should talk to his doc

about trying Colchicine (for FMF)? My mom has FMF. tested neg. for FMF,

but I understand he could still have it. I am concerned that if he has FMF and

isn't taking the medication for it, he could have serious medical problems down

the road.

Sorry this is so long but I just keep getting more confused and would appreciate

some help. Thanks, Cheri

[Guest guest]

Hi Cheri

It's been confirmed to me by several different doctors that Prednisone helps

with many PFSs, not just .

I'm not very familiar with FMF, however I Remember reading on this board that

kids who test negative for FMF might still have it, but just a different

mutation. If your mom has FMF it just seems like such a coincidence for your son

to have a PFS other than FMF. I think it's worth discussing FMF-particular

treatment with your doctor.

Hope this helps

Take care

Inga, mom of Emma, 2 years old (just started fevering again today only 2.5 weeks

after the last episode :-(

[Guest guest]

Hi that's what makes me mad if the specialist is so sure my son has fmf, and

have been waiting on tests for over four years why doesn't she just put him on

the colchicine to save his kidneys in the further she knows his grandmother

died of kidney failure. Is the Italian heritage one that is sure to get kidney

failure?

[Guest guest]

Thank you Fran. I guess that makes a lot of since, but why do they keep

talking about it at the specialist. She keeps saying he will have damage in the

years to come if the genitic tests are not done, have a great day char

[Guest guest]

Chri~ I agree with Inga. You should definately pursue meds for FMF, espeically

with the family history. Like all of us do, this is just another case where you

might really have to advocate for your son! Best of luck! Jolie

[Guest guest]

thank you and bless you too and joseph

[Guest guest]

>Is the Italian heritage one that is sure to get kidney

> failure>

This is an ABSOLUTE NO. Ethnicity has NOTHING to do with kidney

disease with FMF or ANY of the fever disorders. It is the GENE that

causes the damage.

Fran

Fran Bulone RN

Mom to ph 8yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia

12/06

Waxhaw NC

/

http://www.caringbridge.org/visit/josephbulone

[Guest guest]

Hi

The reason the specialists bring this up is because kidney issues

ARE a secondary disease with FMF (and other fever disorders) If a

genetic mutation is found they monitor the kidneys and place the

child or adult on colchicine. If NO KNOWN mutation is found and the

docs believe the child or adult HAS FMF, they usually do a trial run

of Colchicine. IF You get a positive response then the individual is

diagnoses as Clinical FMF. They STILL monitor the kidneys.

Colchicine helps PROLONG kidney issues and in many it never

develops. I hope this helps you understand. It IS important to get

the genetic studies although there are still UNKNOWN mutations. The

cost if insurance does not pay is about $400.00. With a KNOWN family

history and a letter of medical neccesity it is easier to get the

testing approved for the most part with the bigger insurance

companies. If denied I would save and pay for it out of pocket

especially if you have NOT started the medication.

God Bless

Fran

Fran Bulone RN

Mom to ph 8yr CIAS1 mutation 11/05; Dyspraxia 11/06; Dyslexia

12/06

Waxhaw NC

/

http://www.caringbridge.org/visit/josephbulone

[Guest guest]

Thanks Inga! Cheri

[Guest guest]

my daughter started her fevers at 6 mths

Tammielee

[Guest guest]

Hello, I apologize for how long it has taken to respond to your post. I saw it

shortly after you posted it, but I haven't had time to get back on to respond.

My son is now 22 months old. I have a record of him fevering since he was 5

months old, but I know he started earlier than that, we were told by our MD it

was just virus exposure so I never wrote it down.

He fevers every 2 weeks, 104-105 degrees, that lasts for 3 days. He is now

taking naprosyn (naproxen) liquid twice a day from the pediatric rheumatologist

we saw at UC San Francisco. Naprosyn is an anti-inflammatory in the same class

as ibuprofen. It is known by the brand of Aleve in over the counter tablets,

liquid form is only by prescription. He takes 125mg (1 tsp) twice a day (12

hours apart). Before he started this medication he slept on his stomach during

episodes also, that was when he slept. He was awake for almost the whole 3 days

with small periods of an hour to 2 hours of sleep. He would vomit and had

absolutely no appetite for solid food. Milk/formula was hard to keep down him

also, but he would be hungry. I would give him unflavored pedialyte that seemed

to help calm his stomach.

Now on the naprosyn his fevers never get over 102 degrees. Recently they have

only been around 99 and sometimes no fevers, he just doesn't feel well and has

difficulty falling asleep. He eats completely normal, like when he is well. No

vomitting at all since we started the med.

The ped. rheumatologist said that naprosyn completely stops the fevers from

coming on in some children. She said you could give it to them at the first

signs of an episode, before the fever starts if you could tell. If you can't

tell until the fever hits, she recommended giving it every day to 'get ahead of

the fever'. You can supplement with tylenol inbetween the naprosyn if necessary

also, but NO ibuprofen. She said the fact that the naprosyn works only

indicates that it is an inflammatory condition, it doesn't indicate a diagnosis

for a specific syndrome.

Several months ago I also started giving Tyler YoBaby yogurt every day. It

has 6 live cultures in it. I have noticed a huge difference in his stomach from

that as well. Our local store ran out of it for about a week a month ago.

Right away Tyler began belching and having a bad stomach. I mentioned it to our

regular Pediatrician. He said it shouldn't have anything to do with the fever

episodes, but there is so much they don't really know for sure. I say if it

helps, than it has something to do with it.

Naprosyn needs to be given with food or after food as it can be hard on the

stomach. I mix his first dose in his breakfast. He has unflavored oatmeal with

the yogurt mixed in it. I put the mixture back in the yogurt container and mix

in the naprosyn. I feed that to him first, incase he doesn't eat all of the

cereal. That way I know he gets a full dose. At night I give it to him a

little before bedtime after a snack of cracker or pudding. I let him have a

little water to wash it down good.

It has made such a HUGE difference in his well being during episodes, I can't

say enough about it. He would shiver, his fevers would climb so fast. The

ibuprofen and tylenol sometimes wouldn't touch his high fevers. We would give

him tepid baths. It was horrible, and I feel for everyone who has to go through

the same thing.

I hope this information helps your friend's son in some way.

Pruden

[Guest guest]

Hi,

I've been considering Naprosyn but our ID at Denver Children's did not recommend

it. She said that a rheumatologist would be more apt to prescribe it. Do you

give it to Tyler everyday regardless of fever? Did your doctor warn you of any

side effects or have you noticed any? Thank you for sharing this!

My son Ian is 27 months old and has been fevering since he was 11 months. He's

been on cimetidine for 4 months now and we thought his fevers were getting

milder and spacing out, but he is fevering right now and hit the 105's twice

yesterday - so disappointing. I did not have high hopes for cimetidine anyway.

I would love to eliminate all the motrin and cimetidine and just use naprosyn

but I don't know if I would feel comfortable giving it to him everyday.

My in-laws live in Vancouver, WA and are very happy there. Good luck with the

move!

carol

[Guest guest]

IMO no scoby means it wasnt done. your first batch often takes longer, maybe 14

days or more, then subsequent batches will take longer. my advice is to start

another batch and let it go til you get a nice thick scoby, them bottle.

 

Newbie questions

Hello All,

I just bottled up my first batch of kombucha using a gallon sun tea

jar. I tasted it pretty done to me, a little sweet but vinegary, with

some bite. I just looked at the calendar and it's only been going for

5 days. Oops. I didn't add any flavoring, can I just let it finish

in the bottles? And for how long? Temperature is about 76* and I am

using green mineral water bottles.

Also, does the strength of the tea affect fermentation or just flavor?

The tea package calls for twice the amount of tea bags as the recipe

in NT.

And, does a new scoby HAVE to form at the top every batch? I didn't

get anything forming at the top but a few bubbles.

Thanks,

Jenn

[Guest guest]

Hi Jenn,

To answer your first question- that should be fine to just let it finish in the

bottles without flavoring. Some people prefer it that way, so it won't hurt

anything. I agree with , you probably should have let your batch go

longer, especially it being your first one. But it will still be good like this,

so don't worry.

You can probably let the bottles sit for 2-4 days at your normal temp and then

open one to test. Don't be surprised if it doesn't have much carbonation, here

at first. You can work at that later. I you're like me, it will be hard to wait

longer for more carbonation, but if you have patience, it will come. Just don't

forget about some bottles out in the warm or they can really build up a lot of

pressure. Occasionally we hear stories about bottles exploding, or cracking.

You asked about the amount of tea. I don't think it affects the fermentation

real much, mostly just the flavor and quality. The sugar is what does the

fermenting. I use about 10-12 bags per gallon. I think that is about half of

what the tea package calls for.

Good luck and have fun,

Rodrick

Newbie questions

Hello All,

I just bottled up my first batch of kombucha using a gallon sun tea

jar. I tasted it pretty done to me, a little sweet but vinegary, with

some bite. I just looked at the calendar and it's only been going for

5 days. Oops. I didn't add any flavoring, can I just let it finish

in the bottles? And for how long? Temperature is about 76* and I am

using green mineral water bottles.

Also, does the strength of the tea affect fermentation or just flavor?

The tea package calls for twice the amount of tea bags as the recipe

in NT.

And, does a new scoby HAVE to form at the top every batch? I didn't

get anything forming at the top but a few bubbles.

Thanks,

Jenn

[Guest guest]

Hi Jenn....by five days you ought to have seen at least the beginnings of a

SCOBY. On your next brew be sure that where you place your brew is quiet and

undisturbed. If your brewing container is in an area where it gets jostled

or the surface vibrates, this might prevent a SCOBY from forming.

In a healthy culture there should be SCOBY formation.

See Len Porzio's advice:

http://www.geocities.com/kombucha_balance/#No%20SCOBY

You don't need to add anything for flavoring. That is a personal choice one

makes. How long you second ferment is also up to you, but it is recommended

that you 'burp' your bottles at least everyother day until you refrigerate

to prevent excess pressure building up.

The amount of tea one uses also vairies according to personal taste.

Anywhere from six to ten bags per gallon brew is what I use.

As for a five day ferment...your KT is done when it tasted good to you!

Good luck and let us know if you've any more questions...

Gayle

Newbie questions

> Hello All,

> I just bottled up my first batch of kombucha using a gallon sun tea

> jar. I tasted it pretty done to me, a little sweet but vinegary, with

> some bite. I just looked at the calendar and it's only been going for

> 5 days. Oops. I didn't add any flavoring, can I just let it finish

> in the bottles? And for how long? Temperature is about 76* and I am

> using green mineral water bottles.

> Also, does the strength of the tea affect fermentation or just flavor?

> The tea package calls for twice the amount of tea bags as the recipe

> in NT.

> And, does a new scoby HAVE to form at the top every batch? I didn't

> get anything forming at the top but a few bubbles.

> Thanks,

> Jenn

>

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