Questions

[Guest guest]

In a message dated 8/26/00 7:00:31 PM Pacific Daylight Time,

dbornscheu@... writes:

<< Everybody keeps talking about arthritis " flares. " How long do they last?

How often do they occur? Most importantly, how are the children when

they're

not having a flare? Do they still have pain, swelling, limited motion? I

know each case is different, so these questions are probably stupid.

Diane

>>

Diane,

For Tally, I have pretty much figured out how to keep his flares under

wraps. Usually within 2 hours after eating the above foods, his neck starts

to hurt and shortly after, his temperature rises.

Before the prednisone taper, Tally was waking up pain free in the

mornings. However, since we have decreased down to 8mg a day, he is sore in

the mornings now. His wrists haven't been a problem in a while even though

they have been swollen occasionally. His neck is no longer sore but he does

have his knees which tend to swell. The rash hasn't come back nor has the

high temperatures.

How long do the flares last? Every child is different. There is no

recipe for every child. If I restrict Tally's diet to salad, oatmeal and

apple juice the next day and a half, normally I can control the duration.

He has been sore the past week more than normal because he is back in school

where the food leaves much to be desired. I will start packing his lunch

this week. He also doesn't drink as much when he is in school, and he needs

lots of fluids.

Tally is a normal little boy all other times although he does tire out

more than other children. He starts soccer next week and even when he is

sore, just getting him out in the fresh air around other kids, does do

wonders.

Tally is on 8 mg of prednisone a day, 7.5 mg of mtx a week, 200 mg

naprosyn, 3 times a day. I also supplement this with flax oil, glucosamine,

msm, perna and a multivitamin. He is 5 and although he is hairier than

most, he isn't terribly bloated. I believe he has grown because he's now the

same size as his friend. I will know when I go back to his RD on Tuesday

about that.

We are still walking a thin line. Everyday is different. It's funny, I

know when the weather is getting ready to turn because Tally is sore as hell

the morning prior. I'm blessed to have Tally and I tell him everynight how

lucky I am. I'm not sure why this disease is a blessing but I know that it

is somehow. I have met many people who have had Still's as children and grew

out of it. I keep that hope in my heart everynight. My dad's dietician had

it as a child, and now two of her nephews have it. She is fine and one of

her nephews is going into remission. My roommate has a close friend who is

in her 60's now who remember being bed ridden for almost 3 years as a child

because of this disease who woke up one day and it had went away as

mysteriously as it had come. Keep hope and know that when things appear the

worst, they can only get better.

kathy

[Guest guest]

Diane a flare is when the disease is active, they last 2 years or more. The

term when the disease is nor active is remission. They whole thing with Jra

is keeping the child mobule and healthy when they are flaring. this can

prevent perminant damage.When they are in remission they are healthy. I hope

this helps SHU

[Guest guest]

Mark:

A goiter is the thyroid gland expanding, driven by excess TSH, trying

desperately to make T4.

When you provide...iodine, zinc, B6 and the rest of the B complex, macro and

micro trace elements and a few amino acids [Thyrodine] the thyroid can

happily make T4 without going into panic [goiter]. That is assuming there is

no auto-immune dysfunction which would impair nutrients from being used.

The only time Thyrodine may not have been successful...is if there were an

auto-immune dysfunction. That is why we insist upon distributing the

Thyrioid Regeneration protocol....as it eliminates the auto-immune

dysfunction.

Best wishes,

Earl

Questions

Has anyone on this list tried Thyrodine but was not encouraged by the

results?

Does a goiter usually mean one is hypothyroid?

Can a goiter increase and decrease in size (back and forth) over a period

of weeks?

Mark

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[Guest guest]

> That's all I seem to have at this point, is questions. I just

completed the Lyme syptom checklist and there a many check marks on

the page. I want to take this to the dr. tomorrow, along with some

info on lyme, but am afraid that she is going to poo-poo it. I have

found someone who is willing to give my doc the name of a consultant,

if she is willing to listen, but I don't want to jeopardize this dr,

so don't exactly know how to go about approaching the subject. Any

suggestions would be greatly appreciated. I was an RN for 30 yrs and

advocated for patients all the time, but now I can't seem to get up

the nerve to do it for myself. My western blot is indicative, and

along with the sx, I would like for her to at least hear this dr out

and start some abx. Am I being unreasonable to want this?

>

> The human spirit is stronger than anything that can

> happen to it.

>

> C.

I certainly think you're within your right to ask for this,

especially if your WB is indicative. Listen, no one wants to be a

doctor-hopper, but I've learned that if you don't get the help you

need and you're getting the holier-than-thou resistance, ditch'em and

look for someone else. I've had several doctors in the last 3 years

that had their head up somewhere where nature didn't intend, and I

suffered along for awhile listening to them before I realized that

they had no clue and were about to use me as a research rat. If you

don't feel comfortable doing it yourself, take a friend or family

member along as the " bad cop " and let them push and poke for you.

Best of luck, Jim in Alabama

[Guest guest]

thanks Jim,

You know, *I* went along with my daughter when she was getting the run

around and got her diagnosed (she is out of state), but she is now still

battling with local drs to treat her appropriately. The dr who dx her

consults only, although I think at this point she is going to go ahead and

treat her. She did order oral abx, but she needs iv, so my daughter is

checking with drug companies to see if she can get free or low cost meds.

She has no insurance. Did you know that substitute teachers are not covered

under the teachers' plan? It really sucks. It seems so much easier for me

to go to bat for her than for myself. I can be much more assertive if I

don't have to face the fear of rejection. Oh well...

I will try my darndest tomorrow for me.

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

, for what it's worth, all my lab worth was negative, but I, too, had so

many checkmarks on that symptom list you could hardly see the list! I think

if one of your tests it indicative and you have all those symptoms, you owe

it to yourself to get dr. to consider Lyme treatment pronto. Can you use

your RN patient advocate skills and advocate for yourself? Could you take

along a friend (possibly another RN) as an advocate? Just my thoughts. Good

luck. ==Charlotte

[Guest guest]

thanks Charlotte,

I don't know anyone who can go with me, but I will try to pretend that I am

advocating for someone else. Maybe that will work. My fingers are locking

up on me here, but I wanted to thank you for your support.

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

In a message dated 9/25/00 6:34:12 PM Eastern Daylight Time,

pkvam@... writes:

> I have been on " the diet " for a week, basically proteins, vegetables, no

> sugar, fruit or grains, and I feel absolutely terrible

*****You are having typical symptoms of " die-off " (real name Herxheimer's

Syndrome, commonly called " herxing " ). That means that you are killing the

yeast, and they are dumping their toxins into your bloodstream even faster

than normal. Go to the web and research Candida, or Herxheimers, and read

all about it. Perfectly normal, and something we ALL must go thru (to some

degree) to get rid of the yeast. HOWEVER, you can temper the symptoms (the

pain, the spacey feeling, etc). bu drinking lots of water, or using

colonics/enemas to wash the toxins out of your GI tract. That is the primary

place for Candida to " set up shop " , and getting them out of there FAST is a

major help. Trust me..... I KNOW!!!! LOL Just had a colonic today, myself.

Whatever you do, DO NOT give up the ship at this point. You are off to a

good start, and these symptoms prove it. Just hang it there..... it gets

better.

Lynn

[Guest guest]

I'm late on the answer to the Vitamin C flush, but i did that last year. i

ended up in the hospital which was my own fault. i figured if i was to flush

out my system why eat? so i didn't eat before and during the c-flush, i

should've stopped earlier than what i did also & i didn't. i was on a roll &

wanted to make sure i was doing it good! i thru up about 3 times at home &

twice at the hospital. they did a drip bag of Benadryl & something else i

forget. it took me about 3 days to get back to normal BUT i flushed out

everything! it's fine if you follow instructions! i suggest following

instructions! good luck! Mogdrmom

[Guest guest]

In a message dated 9/25/00 8:34:00 PM Central Daylight Time, mogdrmom@...

writes:

<< i suggest following

instructions! good luck! Mogdrmom >>

What were the instructions that you didn't follow? I have just read that one

should mix 2 teaspoons of powdered viamin c with 8 oz. of water and this

should be done every half hour until your system starts to " flush " . Any

other advice?

Tracey

[Guest guest]

All of these are symptoms of die-off!! Stick to the diet, you're almost

through with the die-off and will feel better.

Also, just because the only " symptom " you have is chronic yeast infections,

does not mean you do not have systemic candida. This was one of my first

symptoms of systemic candida and yes, it was the only symptom at that time.

However, I have since learned that a yeast infection does not begin in your

vaginal area. It BEGINS in your intestines and travels through the rest of

your body from there. If you have a vaginal yeast infection, you most

certainly have a yeast infection in your intestines. The only way to treat

that and keep it from becoming systemic (if it isn't yet) is to stick to

proper diet, supplements, etc.

Good luck,

In a message dated 00-09-25 18:35:06 EDT, you write:

<<

I have been on " the diet " for a week, basically proteins, vegetables, no

sugar, fruit or grains, and I feel absolutely terrible. I think my body

needs carbohydrates. You would think anyone would be healthier eating lots

of vegetables, but I have no energy, a low-blood sugar type headache all the

time and my muscles feel stiff. I don't know if I can continue on this. I

don't think I have a systemic type candidiasis, but I have had it in the

past, so I am scared of getting to that place again. My only symptom is a

vaginal itch that won't go away. (Also, my head is fuzzy, I can't think,

but I think it is from not enough food/nutrients. I have also lost about 4

lbs.) I usually walk 3 miles 5 times a week, but I don't think I could do

it in my current state.

>>

[Guest guest]

You know, I actually read this, turned off my computer, took a shower, was

getting ready for bed, and it hit me.....

I came back on-line to ask you where you got this information?

THIS DOSAGE IS EXTREMELY - WAAAAAAYYYYY - TOO HIGH!!!

This dose isn't even recommended for people who are trying to heal their

bodies of AIDS (which is the most difficult virus to heal from). In fact,

the recommended daily dose for people with AIDS is 2 tsp per DAY (vs. half

hour) and some would say that may be too high (while others may say it's too

low). Still, for someone just doing a detox or even with candida, 2 tsp per

day would probably be too much.

The proper way to take vitamin C is the following:

Day 1: Take approx. 1000 mg (or 1 gram) = less than 1/4 tsp. powdered Vit. C

(divide evenly throughout the day in no more than 1000mg at a time)

Day 2: Take approx. 2000 mg (or 2 grams) = less than 1/2 tsp. powdered Vit.

C (divide evenly throughout the day in no more than 1000mg at a time)

Day 3: Take approx. 3000 mg (or 3 grams) = less than 3/4 tsp. powdered Vit.

C (divide evenly throughout the day in no more than 1000mg at a time)

Continue this pattern each day (adding 1000mg per day) until you get

diarrhea. Then cut back 1000mg per day until the diarrhea stops.

Diarrhea is a sign that your body has more vitamin C than it needs. Even

though you can't *really* overdose on Vitamin C, having diarrhea for several

days is not a pleasant experience, especially when (coming from someone who

has experienced Vit. C overdose several times) it's not a pleasant feeling

coming out, if ya know what I mean. In fact, it can be pretty painful -

stomach cramps shortly after eating, extreme burning diarrhea, causing

hemorrhoids, etc. Not to mention the fact that it also flushes the nutrients

out of your body which can make you sicker.

Are you sure this isn't a typo and they meant UP TO 2 tsp a day??

~

In a message dated 00-09-25 21:48:38 EDT, you write:

<<

What were the instructions that you didn't follow? I have just read that

one

should mix 2 teaspoons of powdered viamin c with 8 oz. of water and this

should be done every half hour until your system starts to " flush " . Any

other advice?

Tracey

>>

[Guest guest]

> > I have been on " the diet " for a week, basically proteins, vegetables, no

> > sugar, fruit or grains, and I feel absolutely terrible

>

> *****You are having typical symptoms of " die-off " (real name Herxheimer's

> Syndrome, commonly called " herxing " ).

Some people can reduce their herxing by taking pantethine and molybdenum. I

believe there's a little more information at www.modernherbalist.com.

I've had very good results with pantethine in general.

_________________________________________________________

[Guest guest]

This is never really talked about and I thought I may jump in...... This is

a little delicate. And I am sure most of you know but just in case.....

If you are susceptible to vaginal thrush, when wiping the vaginal area after

going to the toilet don't forget to wipe from front to back, NOT back to

front. Try not wearing any underwear and wear loose clothing. And try the

old yoghurt on the tampon thing - soak for a couple of hours and then

insert. I found raw garlic really helped my vaginal thrush.

Ok. I hope I haven't offended anyone. It just seems these little things

don't come up.

angela

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[Guest guest]

Ginger:

I hope you've read my replies to your questions of the 23rd.

My suggestion is that you find a Lyme Literate MD (abbreviated LLMD on this

list). You can get referrals from the Lyme Disease Foundation

http://www.lyme.org/index2.html .

An LLMD should be up-to-date on the concurrent infections that can be passed

by ticks.Sometimes other diseases with a tick vector are transmitted by the

same bite: Babesiosis (caused by the parasite Babesia -- sort of like

malaria) and Erlichiosis (caused by a rikettsia, like RMSF) are known

deseases like this. I would not be surprised if you got something else with

your RMSF.

The treatments for the different diseases are not the same -- ie. the

treatment that killed the RMSF rikettsia may not have effected another

organism.

These diseases are not well understood in the medical community (and with

many doctors, what they don't understand doesn't exist except in the

patient's mind). You are having the symptoms and you have the right to find

out what is wrong -- and not be dismissed as having psychosomatic problems,

or an autoimmune disease, or some syndrome like Fibromyalgia they tell you

they can do nothing about.

You have something and you should insist that they prove their diagnosis is

correct (especially if the result of the diagnosis is that you get no

treatment or treatment that may be useless or counterproductive -- such as

steroids in the case of an MD diagnosis that may really be Lyme).

Good luck,

Ken

[ ] questions

> Pepi & Others

>

> You seem to know a lot about this tick business. Please help me. I'm

going on now with almost 12 years of " sickness " and can trace all my

ailments and medical problems back to when I was hospitalized with Rocky Mtn

Tick Fever. It darned near killed me.

>

> Please tell me how to talk to my internist about this without sounding

like a nut. I just know I'm not well and my quality of life is going

steadily downhill.

>

>

> Thanks to all.

>

> email me at

>

> worrelg@...

>

[Guest guest]

i was flushing my system but i kept at it till it was clear. really clear!

not brownish but clear. at least i know it was a good flushing! LOL! i should

of stopped probably about 3 hours before i got sick. Mogdrmom

[Guest guest]

i didn't take regular Vit. C. i took a powdered Vit. C i just looked up my

records and i did 14 doses at 1 tsp. with water (althou you could use juice)

every 1/2 hour till the stool was dirty water. Than you add up how many

teaspoons you had & the mg. Subtract 1000mg, divide by 4, take that much 4 X

daily & you shouldn't get diarrhea if it does lower the dose & divide, this

shopuld clean out the liver and immune system. the C i was taking was not

acidity but was a neutral powder. needless to say i haven't taken any since.

these were my instructions i was given. Mogdrmom

[Guest guest]

> If you are susceptible to vaginal thrush, when wiping the vaginal area

after

> going to the toilet don't forget to wipe from front to back, NOT back to

> front. Try not wearing any underwear and wear loose clothing. And try the

> old yoghurt on the tampon thing - soak for a couple of hours and then

> insert. I found raw garlic really helped my vaginal thrush.

>

> Ok. I hope I haven't offended anyone. It just seems these little things

> don't come up.

>

> angela

Another thing no one ever mentions - if you've tried everything and you

still have problems, get a Great Smokies vaginosis profile. I found out

that I had four bacterial infections and hardly any Candida. Who knew?

Great Smokies Lab:

www.gsdl.com

__________________________________________________

[Guest guest]

In a message dated 00-09-26 14:03:45 EDT, you write:

<<

i didn't take regular Vit. C. i took a powdered Vit. C i just looked up my

records and i did 14 doses at 1 tsp. with water (althou you could use

juice)

every 1/2 hour till the stool was dirty water. Than you add up how many

teaspoons you had & the mg. Subtract 1000mg, divide by 4, take that much 4 X

daily & you shouldn't get diarrhea if it does lower the dose & divide, this

shopuld clean out the liver and immune system. the C i was taking was not

acidity but was a neutral powder. needless to say i haven't taken any since.

these were my instructions i was given. Mogdrmom

>>

1/4 tsp of powdered Vit C = 1125 mg....so, you took over 60,000 mg of Vit. C

in 7 hours? Yikes! No wonder you were hospitalized!

I'm glad you recovered and are well now. That's scary. I'll remember that

next time I'm feeling sick and want to OD on Vitamin C

Hugs,

[Guest guest]

forget the oranges,

[Guest guest]

I am new to this group. Have what I believe to be candidiasis for 10 years, and have had enough. But I had heard that juice was a no no. I have heaps of oranges on my tree. Should I be juicing them?

I am not sure where to start, but i will beat it. I have heard a bit about tea tree oil, but you can't drink it. How do I use it?

Leo<< i didn't take regular Vit. C. i took a powdered Vit. C i just looked up my records and i did 14 doses at 1 tsp. with water (althou you could use juice) every 1/2 hour till the stool was dirty water. Than you add up how many teaspoons you had & the mg. Subtract 1000mg, divide by 4, take that much 4 X daily & you shouldn't get diarrhea if it does lower the dose & divide, this shopuld clean out the liver and immune system. the C i was taking was not acidity but was a neutral powder. needless to say i haven't taken any since. these were my instructions i was given.

[Guest guest]

paula,

i felt terrible for the first 2 weeks of the diet. but, you get better much

much better.

raen

>From: " a Kvam " <pkvam@...>

>Reply-candidiasisegroups

>candidiasisegroups

>Subject: Questions

>Date: Mon, 25 Sep 2000 15:29:01 PDT

>

>Hi,

>

>I have been on " the diet " for a week, basically proteins, vegetables, no

>sugar, fruit or grains, and I feel absolutely terrible. I think my body

>needs carbohydrates. You would think anyone would be healthier eating lots

>of vegetables, but I have no energy, a low-blood sugar type headache all

>the

>time and my muscles feel stiff. I don't know if I can continue on this. I

>don't think I have a systemic type candidiasis, but I have had it in the

>past, so I am scared of getting to that place again. My only symptom is a

>vaginal itch that won't go away. (Also, my head is fuzzy, I can't think,

>but I think it is from not enough food/nutrients. I have also lost about 4

>lbs.) I usually walk 3 miles 5 times a week, but I don't think I could do

>it in my current state.

>

>What works for a vaginal infection? I am taking Diflucan 150mg once per

>week, but it doesn't seem to be working. Does Nystatin work in a different

>way? I think my Dr. would prescribe that if I asked. Someone said it is

>much stronger than Diflucan. Could my vaginal yeast be resistant to

>Diflucan? Might Nystatin work better? Nystatin powder in water 3 times

>daily for 3 weeks along with a strict diet cured me many years ago of a 2

>year stystemic candida infection.

>

>I really don't think the way I am feeling is because of die-off, because I

>have been healthy and active and my only symptom is this vaginal itch right

>now. Do you think I need to be on this diet if that is my only symptom or

>am I going overboard? I really want my sex life back. Any advice???

>(Sorry if I sound like I am whining, I know many of you have much worse

>symptoms).

>

>a, Wash. State

>

>

>

>

>_________________________________________________________________________

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>

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[Guest guest]

Thank you very very much.

[Guest guest]

Hi :

The black legged tick (also known as the deer tick), which is the Lyme

Disease vector, is very small -- about the size of a poppy seed. It is very

easy to miss one.

While most of the time it does take up to 48 hours to transmit the

infection, the time can be shorter.

Take a look at http://www.igenex.com/lymeset2.htm for a description of the

Western Blot IgG and IgM tests.

" EIA " is probably ELISA -- a notoriously inaccurate test. If you have a

positive Western Blot and your doctor does not want to treat you, fire him

or her and get a Lyme Literate MD.

Lyme Disease is caused by a spirochete, just as is siphilis. Lyme Disease is

not sexually transmitted (so far as we know) but it does similar things to

the body and has a similar life-cycle. It is known as the new great imitator

because it can mimic so many diseases and its symptomology is so varied. It

can be totally debilitating early on and progress from there, it can mimic

Muscular Distrophy, ALS, Rheumatoid Arthritis, Fibromyalgia, and may other

diseases. It can infect any part of the body, including te heart and the

brain. In the brain it cases a classic pattern of low blood-flow that leads

to depression and also memory problems similar to dimentia.

The symtoms do not necessarily continue until diagnosis. The spirochetes can

convert themselves into a cyctic state in which they can evade the immune

system. After years of dormancy, with occasional flare-ups, late-stage Lyme

can manifect itself with some of the symptomologies listed above.

I hope this helps.

Ken

[ ] questions

> I am confused.

>

> I thought that when a tick bites you.....it embeds itself and grows as it

> feeds off of your blood......How then do so many people get bit and never

> even see the tick? Where does it go?

>

> I also read it takes 2 days to give the Lyme disease to you, so how can

you

> go two days without noticing a tick?

>

> Also,

>

> Does anyone know what the IMg and the IGg tell you on the blood test.

>

> If the first one is positive and the second one is negative, I thought

that

> indicated a recent exposure? How recent is recent?

>

> Lastly,

> and I apologize for all the questions here,

>

> When one is bitten, and gets only the fever, fatigue etc.....and it goes

> undiagnosed for weeks(say 6-10), do these symptoms continue until

diagnosis?

> And is the joint pain in all joints or just on one side of the body?

>

> I have shown positive recently, but docs say my symptoms are not

consistent

> with the blood results and want to retest. They are using an " EIA "

> confirmatory test?

>

> Anyone every heard of this?

>

> Thanks, and Love and Prayers to all,

>

>

[Guest guest]

What about if the tick gets you in the head or in your groin or somewhere you

do not see it. And-it only takes 4 hours, not 2 days.