Re: Digest Number 63

[Guest guest]

Hi ,

When I saw your last message, I knew I had to apologize as soon as I had the

chance to write back. I am so sorry about not only the length of the digest

version message but also for the fact that so much of it was in html code.

Yikes!

That must be really hard! In my case, sometimes I won't have the opportunity to

spend time online for a few days and then when I do, I tend to make a lot of

posts all at once. After seeing that ultra long digest attached to your message,

for anybody who is signed up for the digest version, I would seriously consider

changing it to the regular mail version, instead. Seems so much easier, IMO, to

sort through each message. Try it and see if you like it :-) In my mail folder,

I

have a separate file called the jra list. I just stick all of these messages in

there until I have a chance to read and respond. Much easier.....

Well, it sounds promising that your current doctor was able at least to

recommend

you see someone at Tufts. I take it she's a pediatric rheumatologist? That

wasn't

too nice of him, to say she probably wouldn't find anything. From what you've

said, it sounds like he hasn't even been able to even control your son's

symptoms. If he still has so much inflammation and rash and pain and other

outward symptoms, and the doctor's already weaning him from prednisone and

telling him to just take an NSAID, I couldn't see what harm would come from

consulting with someone else. At least he was decent enough to say that he

doesn't know if it's jra or something else, maybe related to his allergies.

Hmm.... I recently read of someone's doctor telling them that 'net-people,'

people who find support and information from online resources, often know more

about their illnesses than the doctors treating them :-) If the doctor thinks

that your doing some research on the internet is a negative thing, I'd be even

more skeptical and leery of him! Especially since he seems to be making

statements that just are not true. The nature of many arthritis disorders is

that

often the symptoms tend to come and go and return, over time. People often have

spontaneous or medically induced remissions, lasting for different lengths of

time and sometimes forever. Even those with jra.

Well,don't ever worry about letting off some steam, here. It's recently been

proven to be beneficial!

So, let us know what you decide to do and good luck, if you see the new doctor

at

Tufts. I, for one, will be curious to hear what she has to say :-)

Take Care,

Georgina

[Guest guest]

I'm a little confused after reading Katzmeyow@...\'s story. I seem

to be getting from it that she was started on Interferon & Riboviron despite

having a zero viral load, normal liver readings and normal liver biopsy. Am

I interpreting this correctly? Were others advised to go on treatment

despite normal markers? The reason I'm asking is this: my youngest child (14

year old daughter) also has HCV. Our best guess is that she caught it from

me at birth - only a 6% chance of that, but still the only way we can imagine

she got it. My older children and husband and are negative. Although I began

Interferon treatment a couple of months ago, we decided to have my daughter

wait. Her viral load is 0, her liver enzymes are normal, no liver biopsy for

her as yet since she literally feints when getting a regular needle and would

need special provisions for the liver biopsy; can't tell someone to hold

their breath and not move if they are going to feint during the procedure!

Besides, all other indicators seem to show she has no liver damage at this

time, so the liver biopsy didn't seem to be needed right now. Our plan was to

have her liver enzymes and viral load checked every 6 months, keeping her off

treatment as long as she stayed normal. Does this seem to run counter to

what most of you have been advised by your physicians?

BTW - I posted the other day that I've felt better than expected regarding

side-effects during the 2 months I've been on combo Interferon therapy.

Under the heading of speaking too soon - I have my first menstrual cycle

since I started (skipped last month). Talk about feeling bad! Migraines,

nausea; I barely got out of bed yesterday! Do any other women out there

notice that 'that time of the month' is much worse than the rest, or is this

just coincidence? A curse upon the errant gene which delays the women in my

family from menopause until past average age!

-

[Guest guest]

My primary care physician recommended that I start the drug combo. However,

when I saw my hepatologist, he laughed at that! " No way! " was his response.

No reason to put me through that if my enzymes are normal. I have not seen

him since my liver biopsy that was done when I had my gallbladder removed.

So, I don't know, if anything, it means to have a pathology report that says

both " numerous polyps " and " regnerative cells " . If anyone can clue me in on

the meaning of this, I'd be most grateful.

Also, has anyone had gallbladder problems and is it related to HepC?

Gerri

Tucson, AZ

Re: Digest Number 63

From: Birdbrdr@...

I'm a little confused after reading Katzmeyow@...\'s story. I seem

to be getting from it that she was started on Interferon & Riboviron despite

having a zero viral load, normal liver readings and normal liver biopsy. Am

I interpreting this correctly? Were others advised to go on treatment

despite normal markers? The reason I'm asking is this: my youngest child

(14

year old daughter) also has HCV. Our best guess is that she caught it from

me at birth - only a 6% chance of that, but still the only way we can

imagine

she got it. My older children and husband and are negative. Although I began

Interferon treatment a couple of months ago, we decided to have my daughter

wait. Her viral load is 0, her liver enzymes are normal, no liver biopsy

for

her as yet since she literally feints when getting a regular needle and

would

need special provisions for the liver biopsy; can't tell someone to hold

their breath and not move if they are going to feint during the procedure!

Besides, all other indicators seem to show she has no liver damage at this

time, so the liver biopsy didn't seem to be needed right now. Our plan was

to

have her liver enzymes and viral load checked every 6 months, keeping her

off

treatment as long as she stayed normal. Does this seem to run counter to

what most of you have been advised by your physicians?

BTW - I posted the other day that I've felt better than expected regarding

side-effects during the 2 months I've been on combo Interferon therapy.

Under the heading of speaking too soon - I have my first menstrual cycle

since I started (skipped last month). Talk about feeling bad! Migraines,

nausea; I barely got out of bed yesterday! Do any other women out there

notice that 'that time of the month' is much worse than the rest, or is this

just coincidence? A curse upon the errant gene which delays the women in my

family from menopause until past average age!

-

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[Guest guest]

I just got back from the doctor. He said my disease doesn't seem all

that progressed and my liver probably isn't damaged. I had some more

blood work today and go Friday for an ultrasound and a lipid (?) blood

test. If everything turns out ok then he is going to start me on the

medication. He said he didn't recommend a biopsy but it is up to me so

I " m choosing not to because I have heard the horror stories. He said

that some people in my place choose not to even take the medicine but I

just want it gone and out of me. What's really bothering me is my

husband has been trying for six months to get on a study for his

disease. I have insurance but not him. So here I am happy that I'm not

that bad and there's hope for me but at the same time I am so guilty

that he will have to wait and may not get help before it is too late. I

would never have been tested had he not got sick. Thank you all for

listening.

Ray

[Guest guest]

Why don't you add him to your insurance??

Gerri

Tucson, AZ

Re: Digest Number 63

From: jabsgirl@... ( Ray)

I just got back from the doctor. He said my disease doesn't seem all

that progressed and my liver probably isn't damaged. I had some more

blood work today and go Friday for an ultrasound and a lipid (?) blood

test. If everything turns out ok then he is going to start me on the

medication. He said he didn't recommend a biopsy but it is up to me so

I " m choosing not to because I have heard the horror stories. He said

that some people in my place choose not to even take the medicine but I

just want it gone and out of me. What's really bothering me is my

husband has been trying for six months to get on a study for his

disease. I have insurance but not him. So here I am happy that I'm not

that bad and there's hope for me but at the same time I am so guilty

that he will have to wait and may not get help before it is too late. I

would never have been tested had he not got sick. Thank you all for

listening.

Ray

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[Guest guest]

ease doesn't seem all

that progressed and my liver probably isn't damaged. I had some more

blood work today and go Friday for an ultrasound and a lipid (?) blood

test. If everything turns out ok then he is going to start me on the

medication. He said he didn't recommend a biopsy but it is up to me so

I " m choosing not to because I have heard the horror stories. He said

that some people in my place choose not to even take the medicine but I

just want it gone and out of me. What's really bothering me is my

husband has been trying for six months to get on a study for his

disease. I have insurance but not him. So here I am happy that I'm not

that bad and there's hope for me but at the same time I am so guilty

that he will have to wait and may not get help before it is too late. I

would never have been tested had he not got sick. Thank you all for

listening.

Ray

===============================

Hi ,

sorry for my ignorance, but do you and your husband both have hepC?

it is good that you are ok, another q's are you talking about taking

interferon?

and to answer your Q's about why my husband can't take interferon, the

doctor said some of the meds he is taking for his heart and his tranpslant

wont work with interferon,

pauline.

[Guest guest]

My human resources person looked into it and to add him on it would be

about five hundred dollars a month and the way our pre-existing clause

works it would be a year before it would cover this anyway. I really

don't know why this would be so high unless it's his age. He's fifty

one and I'm twenty six.

Ray

[Guest guest]

ine, Yes, we both have Hepatitis C and the doctor wants to put me

on interferon.

Ray

[Guest guest]

I work for a medical insurance company and it is my understanding that they

have to cover pre-ex conditions after one of two conditions are met. 1.

treatment free for 3 months or 2. one continuous year of coverage. If your

husband does not need medical attention for three months, he should be

covered. I believe this is standard practice. ASK questions!!!! Ask to see a

layman's term of your policy.

Re: Digest Number 63

From: jabsgirl@... ( Ray)

My human resources person looked into it and to add him on it would be

about five hundred dollars a month and the way our pre-existing clause

works it would be a year before it would cover this anyway. I really

don't know why this would be so high unless it's his age. He's fifty

one and I'm twenty six.

Ray

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[Guest guest]

I thought Congress had passed legislation recently (within the past 2 years)

that eliminated that " existing condition " clause as part of the health care

reform.

[Guest guest]

I really don't know anything about any of this. I am going to get on

the phone today and find out what my insurance company will tell me.

I've just been going by what the lady at work says. She said because I

didn't pick him up when it was offered in November (or December) that I

would have to pay five something a month and he wouldn't be covered for

anything pre existing until that year's anniversary came up. But even

if I found out he would be covered tomorrow I still don't know what we

would do because that is half a month's income for us. (But maybe she

doesn't know what she's talking about and it wouldn't cost that much.

I'll just have to see.) That's why our doctor said that maybe if I go

on the drugs that the drug company will work something out because we

are in the same household and one of us is paying. That didn't sound

right to me either but I'm just trying anything I can.

Ray

[Guest guest]

Yea, that's what I was trying to explain. They cannot NOT cover his

expenses. I still think that on older plans you have to go 3 months

treatment free or a year of cont coverage.

Gerri

Tucson, AZ

Re: Digest Number 63

From: TreeSkinnr@...

I thought Congress had passed legislation recently (within the past 2 years)

that eliminated that " existing condition " clause as part of the health care

reform.

------------------------------------------------------------------------

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[Guest guest]

The time period she is talking about is called open enrollment. Generally

you cannot add anyone to your active policy or make changes except during

open enrollment. Some companies offer open enrollment twice a year, however,

the norm is once a year. If you wait until then, and find out when it is for

you, it will NOT cost that much. It will be a little more of a premium than

you pay now.

IF she is still INSISTING about pre-existing, tell her you wish to speak to

the plan administrator. I KNOW that the plan administrator has full control

over what is covered and what isn't. They also have the power to over ride

certain plan conditions. We do it ALL the time!! Example: a plan only

covers, say 100 days per calendar year for Home Health Care. If the patient

warrants it, the plan admin can over ride this and extend coverage. Ask the

plan admin SPECIFICALLY about pre-ex. If there is anything you don't

understand, ask questions or ask her to explain better until you do! It's

HER JOB!! Do NOT walk away unsure of anything. Too many employers don't

bother to take the time to explain how the benefits work for you.

Don't talk to just any ninny..talk directly to the plan admin. I don't know

how well you are anchored in your job, but being a pest is the quickest way

to get what you want in this type of situation. Good LUCK!!

PS what insurance company is it?? Gosh, I hope it's not the one I work for

Gerri

Tucson, AZ

Re: Digest Number 63

I really don't know anything about any of this. I am going to get on

the phone today and find out what my insurance company will tell me.

I've just been going by what the lady at work says. She said because I

didn't pick him up when it was offered in November (or December) that I

would have to pay five something a month and he wouldn't be covered for

anything pre existing until that year's anniversary came up. But even

if I found out he would be covered tomorrow I still don't know what we

would do because that is half a month's income for us. (But maybe she

doesn't know what she's talking about and it wouldn't cost that much.

I'll just have to see.) That's why our doctor said that maybe if I go

on the drugs that the drug company will work something out because we

are in the same household and one of us is paying. That didn't sound

right to me either but I'm just trying anything I can.

Ray

[Guest guest]

I almost forgot---it'll be Monday before I get to talk to her because

she's on a business trip right now.

Ray

[Guest guest]

My insurance company is Blue Cross Blue Shield and I live in AL. I hope

this is your insurance company so you can tell me more! See, I had

another insurance company and then they thought this would be better so

we switched over last winter. I work in fast food and the owner of our

company has four stores and only five of us from each store can have

insurance and then he has his secretary, etc. I can read all the

material and I might as well be looking at a blank piece of paper for

all I get out of it and yall have helped me understand this. Looking

back, when I was trying to find out all this stuff from the woman at

work, it was like she was in a hurry and just trying to get rid of me.

Maybe she just didn't want to fool with the paperwork! Thanks so much

to everyone who has tried to help me figure this out. I really didn't

know what this list was all about when I joined but you guys really are

caring and kind.

Ray

[Guest guest]

Nope, my company is called Great West. I'll try to help all I can. Just ask

away! All the answers you want can be obtained by calling BC/BS customer

service. It is their JOB to explain your benefits to you if your plan admin

can't/won't. You just keep asking until you understand. The plan admin is

the one that can get the benefits over ridden should there be extenuating

circumstances.

Gerri

Tucson, AZ

Re: Digest Number 63

My insurance company is Blue Cross Blue Shield and I live in AL. I hope

this is your insurance company so you can tell me more! See, I had

another insurance company and then they thought this would be better so

we switched over last winter. I work in fast food and the owner of our

company has four stores and only five of us from each store can have

insurance and then he has his secretary, etc. I can read all the

material and I might as well be looking at a blank piece of paper for

all I get out of it and yall have helped me understand this. Looking

back, when I was trying to find out all this stuff from the woman at

work, it was like she was in a hurry and just trying to get rid of me.

Maybe she just didn't want to fool with the paperwork! Thanks so much

to everyone who has tried to help me figure this out. I really didn't

know what this list was all about when I joined but you guys really are

caring and kind.

Ray

[Guest guest]

With apologies for late response (focus has been on the conference),

for better or worse, as reflected at this weekend conference, the ONLY

facts and theories that are going to hold up over time are based on good

science, and most parents and support groups have never been exposed to the

level presented at this weekends conference. (Hopefully tapes will be

available rapidly). It is much more likely Dr. Greenberg is correct, than

NOT(While a few children are hurt by vaccines the incidence is the same as

natural occurrence). Please listen to the tapes. By starting to understand

this new branch of science, a lot of parents are going to be surprised. For

the first time there are " real " opportunities to change therapy for our

children in the very near future, if we can create the right focus and

urgency. Here's to a better future for all the children (this weekend's

conference says IT IS POSSIBLE, NOW)

MJG

Wutsername@... wrote:

> From: Wutsername@...

>

> Lois,

> I think you should post the address for correspondence to Woman's World

> Magazine so that those of us that know immunizations to be a factor in our

> child's autism can write and set Dr. Greenberg and the Woman's World

readers

> straight.

> Ricci

>

> << Hi all,

> Well....... I was reading my womans world magazine when I came the

> the house call section and someone wrote this: Q- So far, my one year

> old daughter, , has had several vaccinations without any problem.

> but now I'am afraid to let her have her next scheduled shots because I

> heard that vacciniations could cause autism! Is that true? A- No.

> Recently,a small British study seemed to suggest a link between the

> measles-mumps-rubella vaccination and autism, but the evidence does not

> support that conclusion. By coincidence, the first sympton of autism- a

> disorder in which a young child withdraws into her own world- often

> appear before age three, the very same years when children get bulk of

> their shots, so its all to easy to make a false association. Its

> understandable that your worried, but please don't skip your daughters

> shots- vaccines are safe, effective and essential to her health.

> signed- Pediatrician Greenberg, M.D. diector of the vaccine

> Research center, Childrens Hospital, Pittsburgh. Well...... What does

> everyone think?????Lois, (mom to JJ bug)

> >>

[Guest guest]

Dear ,

I appreciate Theresa jumping in and apologize for delayed response. (for

direct response from me, please co-post to Ask Dr. Goldberg on my website

(?? Sandy, can co-link such questions on both words ??). As I hope has been

illustrated by this weekends conference, there may be a dramatic chance to

help change therapy in the near future for many children, BUT that IS only

going to happen by good science, and researchers at a level many parents

have never been exposed to before. So many false clinical assumptions, or

ideas abound, that it has become ludicrous. Hopefully it is time to demand,

turn to good science, logic, not false hypothesis (with little clinical or

scientific logic).

Note: IF blood work, immune / viral work up points toward a possible

" viral " presence, using medications such as Zovirax, Valtrex, and Famvir,

carry negligible risk, and are considered quite safe. The same can not be

said for Ganciclovir, Foscarnet, and many other treatment plans being

suggested to you as parents. These children are not " guinea " pigs. It is

outrageous what is being done.

With hope that we can really change the future - correctly,

MJG

Message: 12

Date: Tue, 8 Jun 1999 10:03:08 -0700

From: " " <evansc@...>

Subject: viral infection in the brain; attn: Dr. Goldberg

Dear Dr. Goldberg:

I sent an E-mail to your " office " address several days ago, and I hope you

received it. Having since found your address in Tarzana, I mailed the

letter and Website information to you yesterday. I've been in recent E-mail

contact with Binstock regarding possibe HHV6 and other herpes viral

infections my daughter may have, causing or along with probable CFIDS.

Considering her continued recurrent rash since April, and spreading pain in

her stomach, I will ask our family doctor tomorrow to do a panel for the

herpes class viruses. Based on the results of that blood test, I will ask

him to prescribe ganciclovir or foscarnet. PLEASE reply by 2:30 tomorrow if

you have time at all, since I do not want to request medication for her that

may not help. I have requested that the local pediatrician refer our

daughter to you as an expert in CFIDS, but our referral from family

physician to that pediatrician has not been completed yet and our

appointment with pediatrician is not until the 16th. Our daughter is very

ill, and I feel we need to take SOME steps before she sees you if it is to

take as long as I forsee it will.

Please advise.

Yours Truly

Message: 21

Date: Tue, 8 Jun 1999 19:39:45 -0700 (PDT)

From: Binstock <aspergerian@...>

Subject: Re: viral infection in the brain; attn: Dr. Goldberg

Dear ,

I would like to suggest a slightly different emphasis. The immune tests and

*various* infections I talk about are intended as guidelines for lab tests

you might want and that you ought discuss with your child's physician. HHV6

or other viral infections can't be diagnosed from any of my webpages, even

as they suggest what *possibilities* a parent and her child's physician

might want to consider, perhaps even to test for.

Some of the herpes class viruses are extremely elusive; other pathogens may

be present in ways that alter immunity. In other words, even with extensive

lab data a goodly amount of research may have to be done in od\rder to

pinpoint likely etiological factors in any given child.

I sense and appreciate your urgency and the depth of your caring for your

child, but you are seeking to invoke very powerful medications, and until

you've obtained a thorough amount of lab data and had it thoroughly perused

By people capable of such analysis, then... well, I'm not sure what to say,

except perhaps that a ton of Medication Now! is probably not the best way to

move forwards.

Insights from this weekend's conference are very anticipated. And I'm glad

to see that you're entertaining a notion that may become more considered in

the near future, ie, might some of the various pharmaceuticals have a

practical use in *some* autism spectrum children. I, like you, sense the

answer to be Yes, but only after careful analysis of the child's overall

health, immunity, and infectious load.

[Guest guest]

Hi Deb what is planet rx?

ELLEN

www.sweetsoaps.com

[Guest guest]

planet rx is an online drug store

[Guest guest]

please unsubscrib....

[Guest guest]

Vivian,

I copied this recipe quite awhile ago. Someone, I believe on this list, provided

it and said that the name was given to the product by her son! I hope that you

and others find it helpful.

“Skeeter Beater”

2 cups witch hazel

1 ½ tsp citronella eo

1 Tbsp apple cider vinegar

Makes 16-oz. Combine into a spray bottle. Shake vigorously before using.

Requires no refrigeration. Apply liberally. From the Herbal Body Book by

Tourles

[Guest guest]

From: " S. Mats " <she_moon@...>

Subject: Scent stones

I use the recipe posted in Digest 35 by . It

calls for 1/4 c alum.

Gosh, 1/4c - that would be expensive! My 1/4 tsp.

worked just fine.

Cheryl

__________________________________________________

[Guest guest]

>

> " I use the recipe posted in Digest 35 by . It

> calls for 1/4 c alum. "

> Just checked the recipe I posted. It calls for 1/4 TEASPOON alum.

> Couldn't have gotten it wrong as I cut & pasted the recipe.

[Guest guest]

In a message dated 1/4/00 9:47:08 PM Pacific Standard Time,

onelist writes:

<< May I have this recipe? Please email me privately or post to list.

Thanks:)

Angie W.

halpw@...

-----Original Message-----

From: evaframe@... <evaframe@...>

d

>From: evaframe@...

>

>Hi Again !! Just tried Carli's receipe for lotion bars and they are just

>beautiful.

>>

I wish you would post it in the postings sounds like Carli has something

really good. Jacque