NEW MEMBER

[Guest guest]

Hi :

I live in New York. I had to quit work a year ago this month. Do you know

when your disability hearing is coming up? I just had mine in March and am

still waiting on the letter with the decision from the ALJ.

I'm far behind in this post so probably by now someone's already answered your

question about the hearings. I just wanted to let you know that I just went

through mine.

Lou

metzdorf@... wrote:

>Hi Kim, I'm so sorry the CFS came back. I live in Peculiar, just

outside

of Kansas City. I worked for 7 years at American Century, quit since I

was having my 3rd child, after he was born was when I got sick. I worked

part-time at my mother's business she used to have, but I have not worked

for almost 3 years.

[Guest guest]

Welcome to the group Naomi. I use a mobility scooter to get around and

it is totally wonderful. I have a lift to put mine into my van, but

there are a great many different kinds of scooters and some fit in a car

trunk etc. It gives me much more independence and mobility and also

means I can do things I couldn't do otherwise. There are days I am not

up to going out period, but when I am up to it the scooter really has

been a total life saver. I can't use a manual wheelchair myself due to

hand and arm issues, but those are inexpensive and portable if you've

got someone to push you. Electric wheelchairs are way more expensive

than scooters, but way better for getting around stores and such as they

tend to fit better and have a better turning radius.

Sandrea

[Guest guest]

Thanks for the warm welcome, everyone!

Glad to hear that It's not so extreme to use a wheelchair or cane. I'm

planning on trying the wheelchairs at the mall, next time I go with

someone. I figure that the cane might be helpful for when I feel well

enough to go out by myself, to preserve my energy, and a wheelchair

will help when I'm not bed-ridden, but not up to walking, or when I

have to go out even when I'm not up to it, eg drs appts.

Does anyone know if there is a link between CFS/ME and MS?

Also, has anyone experienced nuerological side effects from Cipralex?

Especially after being on it for a while, or when the dose is being

tapered? We're wondering if some of my new symptoms may be related to

medication issues.

Thanks again for the welcome, for sharing your experiences, and -in

advance - for answering my other questions.

Naomi

[Guest guest]

Depends what state you're in. California does have provisions for

things like Rife as long as the practitioner makes everything very

clear, and gets signed permissions and all...

Rife Handbook is the first thing to look at.

www.dfe.net has them .. and a lot of historical (probably more accurate

than a lot of places..) and infomational stuff.

- Dave

Rob or Sunseri wrote:

> I joined this group recently and realize it is over my head. What do I need

to read first to be able to understand all of the terminology?

>

> I understand practitioners cannot charge fees for the rife, but can they

offer treatment/teach treatment? Is that how people get started?

>

> -

>

>

>

[Guest guest]

Oh Sandrea, that's terrible! I see finding a good doctor is kinda like a man -

you gotta kiss a lotta frogs first! UGH! I think we've all had our fair share

of crappy medical care, but it amazes me that once they are somewhat stumped,

they really take it out on US! I was with the same doc for 25 years, he was the

one who dxd me with CFS 8 years ago and has since sent me to every neuro in the

county, and has had me tested for everything it seems, and STILL when I would go

in with no improvement, some things worse, he would just shake his head and say

" why can't these doctor's find MS? " I kept thinking, MAYBE.........just MAYBE,

its' NOT MS!!!!! Seems so SIMPLE to a layperson like myself!

I just happened to find a good doc, by calling a friend of mine that worked at

a local hospital in their MRI department. I know that may sound like a stretch,

but I figured, what is one of the FIRST tests a doc sends you for? an MRI -

someone in those offices may be able to refer you to a good doc???? It's worth

a try anyway

I sure hope you find someone who can help you and more importantly, support

you!

Sandrea Kornblum wrote:

I really envy you the doctors you have. I had a recent visit with my

internist that put me into tears. I asked about Dysautonomia and having

a tilt table test. She was totally emphatic that I can not have this as

it is congenital (which it is not always).

[Guest guest]

We see Dr. G. It's similar but not the same.  Dr. G likes to use ssri's whereas most DAN's don't like to use it until much later if they feel they don't have any other options.  My son was a non-responder to DAN and thrives under the NIDS protocol.  Dr. G does *not* chelate.  He also does not do supps.  He doesn't believe the metabolic issues are primary.  He believe the metabolic issues are secondary to immune issues and if you treat the immune issues you'll alleviate the metabolic issues.  The only supps he uses are regular children's multivitamin, iron, probiotics and isoprinosine.  He's okay with melatonin as long as it's not daily.  He may be okay with other supps but these are all we've been okayed to do.  He also does not like HBOT.  If you go to Dr. G you'll have to learn a whole new protocol and way of thinking as he is very different from DAN.  And he and DAN have a very contentious relationship.  They do not like each other.  With that said, you have to find the right protocol for your child.  My son had little to no response from DAN.  I obviously wanted him to but it just didn't work with him so it was time to move on.  My son fit Dr. G perfectly and responded immediately to the protocol.If you have any questions about Dr. G, I'm happy to answer.CherylHello- I am a new member to this website, and have a few questions in general. I have a son (just turned 6) who was diagnosed with PDD-NOS about 1 1/2 years ago.  Though I do not like the terms, high or low, he is higher functioning-  but repeats / OCD, VERY high stims, no other kid socializing, very overstimulated- sensory wise, poor play skills, etc. We have been doing biomedical treatments- HBOT, supplements, diet changes, IV chelation- but have seem some smaller gains only.  I do think he has major viral issues (he does have high titers of HHV-6 and rubella also).  ?  Do most have their DAN do this anti-viral / anit-fungal protocol- if they have not done it like this before?  He has not had a big gut problem like many- so am wondering if these kids still have the fungal issues?? I am seriously thinking of going to CA to see Dr. Goldberg, we live in WI- is Stan's philosophy and his very similar?  it looks like it from both websites  ? Any others doing chelation of any type with this protocol?  (it seems like alot!)  -Dr Goldberg's office said he does not chelate ?  - a possible concern of mine if needed? My son has so much potential, and I know he can improve or even recover!  but have not found what has worked yet.  This seems to be on and make sense. Thanks for any help. AngieLooking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Thanks so much for the info. Does Dr. G. believe in using alot of anti-fungals with the anti-virals? This makes good sense to me. How long have you seen him for / age of your son, and how soon did you see results? I do not like the idea of using SSRI,s either, is this commonly done, is your son on them? Did he also have a healing regression, and a excretion of heavy metals? I assume he also had some high titer levels? Thanks for the help. AngieCheryl Lowrance wrote: We see Dr. G. It's similar but not the same. Dr. G likes to use ssri's whereas most DAN's don't like to use it until much later if they feel they don't have any other options. My son was a non-responder to DAN and thrives under the NIDS protocol. Dr. G does *not* chelate. He also does not do supps. He doesn't believe the metabolic issues are primary. He believe the metabolic issues are secondary to immune issues and if you treat the immune issues you'll alleviate the metabolic issues. The only supps he uses are regular children's multivitamin, iron, probiotics and isoprinosine. He's okay with melatonin as long as it's not daily. He may be okay with other supps but these are all we've been okayed to do. He also does not like HBOT. If you go to Dr. G you'll have to learn a whole new protocol and way of thinking as he is very different from DAN.

And he and DAN have a very contentious relationship. They do not like each other. With that said, you have to find the right protocol for your child. My son had little to no response from DAN. I obviously wanted him to but it just didn't work with him so it was time to move on. My son fit Dr. G perfectly and responded immediately to the protocol. If you have any questions about Dr. G, I'm happy to answer. Cheryl Hello- I am a new member to this website, and have a few questions in general. I have a son (just turned 6) who was diagnosed with PDD-NOS about 1 1/2 years ago. Though I do not like the terms, high or low, he is higher functioning- but repeats / OCD, VERY high stims, no other kid socializing, very overstimulated- sensory wise, poor play skills, etc. We have been doing biomedical treatments- HBOT, supplements, diet changes, IV chelation- but have seem some smaller gains only. I do think he has major viral issues (he does have high titers of HHV-6 and rubella also). ? Do most have their DAN do this anti-viral / anit-fungal

protocol- if they have not done it like this before ? He has not had a big gut problem like many- so am wondering if these kids still have the fungal issues? ? I am seriously thinking of going to CA to see Dr. Goldberg, we live in WI- is Stan's philosophy and his very similar? it looks like it from both websites ? Any others doing chelation of any type with this protocol? (it seems like alot!) -Dr Goldberg's office said he does not chelate ? - a possible concern of mine if needed? My son has so much potential, and I know he can improve or even recover! but have not found what has worked yet. This seems to be on and make sense. Thanks for any help. Angie Looking for last minute shopping

deals? Find them fast with Yahoo! Search.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Comments within:

>

> Thanks so much for the info. Does Dr. G. believe in using alot of

> anti-fungals with the anti-virals?

Dr. G starts with an antiviral for the first month. After that

month, he adds in an antifungal. He only adds one thing at a time so

don't expect to go in there and get two fistfuls of meds and supps.

He doesn't do naturals.

> This makes good sense to me. How long have you seen him for / age

> of your son, and how soon did you see results?

My son started seeing him just after he turned 3 and he is now 4

years and 4 months. We saw results almost immediately. Within 2

days we started seeing gains.

> I do not like the idea of using SSRI,s either, is this commonly

> done, is your son on them?

Everyone that sees him will likely be on them at some point. He

usually doesn't add it in until about 4 months or so into seeing

him. Yes, my son is on one and has been for about a year. What you

have to understand is that he uses them because they have immune

modulating qualities and improve blood flow to the brain. If you

google ssri's and blood flow you'll get a lot of results.

> Did he also have a healing regression,

My son's die off has not been bad. He had a bit of hyperactivity,

slight aggression, low grade fever but mostly he was just whiny and

running circles around me (literally).

> and a excretion of heavy metals?

If you heal the immune system you heal the bodies ability to excrete

metals on it's own. He doesn't test metals. It's one area he really

doesn't go into as he believes *all* of it is tied to the immune

dysfunction.

> I assume he also had some high titer levels?

Yes, he had high HHV6 and EBV.

Like I said before, if you see Dr. G you really have to get into a

different mindset as it's not a DAN protocol so things DAN people are

doing are *not* what you would be doing. Similar maybe, but not the

same. DAN approaches things mostly with a metabolic standpoint (and

YES, I do know that DAN is dealing with immune issues, too before

someone jumps in tells me how much their DAN is working on immune, I

realize this but the bulk of the DAN protocol is based on metabolic

issues) whereas NIDS is almost entirely immune. I don't believe one

is better than the other. I don't believe any protocol is perfect or

has a " best " approach. I think they all do great things for our kids

you just have to find the one that's right for your child. And that

takes a lot of trial and error.

Cheryl

> Thanks for the help.

>

> Angie

[Guest guest]

I tried this but obviously haven't gotten it right yet. couldn't

get his mouth open wide enough or the pill down far enough. it's

torture either way holding him down to syringe supplements or doing

this trying to get him to swallow. But i'll keep trying - the day

my son swallows pills my life will change (very much for the better).

> >

> > Hi all - we just joined this group - our 4 yr old daughter

> has

> > high levels of the Herpes virus and we were starting a to give

her

> > Valtrex prescribed by Dr Sears. Does anybody have any advice on

how

> to

> > administer these pills into a kid who's strong willed and

fiesty, a

> > picky eater, she only drinks water and she's not quite at level

where

> > we can bribe her. We previously tried forcing liquid vitamins on

her

> > and half of it seems to get spit out. - maybe this will be the

only

> > option

> > - thanks

> >

> > Ken and

> >

>

[Guest guest]

what diet are you doing, have you done IGG testing?

Recovering from Autism is a marathon NOT a sprint, but FULLY possible! Read more about it on my Blogs athttp://www.myspace.com/christelking

new member

Hello-

I am a new member to this website, and have a few questions in general.

I have a son (just turned 6) who was diagnosed with PDD-NOS about 1 1/2 years ago. Though I do not like the terms, high or low, he is higher functioning- but repeats / OCD, VERY high stims, no other kid socializing, very overstimulated- sensory wise, poor play skills, etc.

We have been doing biomedical treatments- HBOT, supplements, diet changes, IV chelation- but have seem some smaller gains only. I do think he has major viral issues (he does have high titers of HHV-6 and rubella also).

? Do most have their DAN do this anti-viral / anit-fungal protocol- if they have not done it like this before

? He has not had a big gut problem like many- so am wondering if these kids still have the fungal issues?

? I am seriously thinking of going to CA to see Dr. Goldberg, we live in WI- is Stan's philosophy and his very similar? it looks like it from both websites

? Any others doing chelation of any type with this protocol? (it seems like alot!)

-Dr Goldberg's office said he does not chelate ? - a possible concern of mine if needed?

My son has so much potential, and I know he can improve or even recover! but have not found what has worked yet. This seems to be on and make sense.

Thanks for any help.

Angie

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.7/1283 - Release Date: 2/16/2008 2:16 PM

[Guest guest]

Hi!

I am a new member and wanted to introduce myself. I have an EMEM 5

rife machine. I got it to treat Lyme a year ago and got too sick when

I did treatments so we stopped and tried to build me up. They said I

was too weak and my immune system needed to be build up. I am very

new to the rife world but I am quite impressed by all the stories and

information that I have read and heard about. I hope to learn more.

My name is by the way. I have been married for 36 years to a

wonderful man who has never known me well. We have two awesome great

grown children. They too had health problems when they were young so

I had to homeschool them and raise them with a strict lifestyle to

give them a chance to build up since no one knew what was wrong with

them or me. They are now quite well. I have been diagnosed with many

different diseases. The last 2 were MS and Lyme. But the reality is

that I was probably born with Lyme or Babesia since my mother and

grandmother had the same symptoms in Europe. As a result I have been

following the health principles all these years and have learned a

lot and still am.

It has been worth it and I am told I am a walking miracle even now!

I cannot use drugs - never have- so learning about Rife even makes it

more important to me. I am looking forward to learning from all of

you the many uses of rifing.

Thanks a lot

[Guest guest]

Welcome Tabitha,

You have found an amazing yahoo group.  Over the years I have learned so much

from everyone here.  You will find a wide range of PMG kiddos on here.   We

were diagnosed when was 5 months old.  He had breatholding episodes

that got the all medical testing started.  Finally... after an MRI ...we

received the diagnosis of Polymicrogyria.   13 years ago...there wasn't much

on the Internet and did not hear the term 'Cerebral Palsy' for another 4

months.   I knew that I was starting a different journey than expected with

our new son (Welcome to Holland is a great poem to describe this

journey).  never met many of his milestones.   Some kids are just

getting diagnosed into their teens... and they have no other thing going on

other than seizures.   is the love of our life.  Each child is so

very different in what they can/can't do.   is 13....very medically

involved and quite possibly the happiest / cutest young

man in the world.  Celebrate what your sweet baby girl can do...not what she

can't.   You are her #1 advocate and will be her biggest cheerleader in this

wonderful game of 'life'.   Feel free to email me anytime.

Blessings,

Sharon - Mom to

Subject: New member

To: polymicrogyria

Date: Friday, June 25, 2010, 9:54 AM

 

Hi everyone. Im a new member of this group. My name is Tabitha and Im 21 years

old. I have a 3 month old that was just diagnosed with PMG and Im terrified. I

dont know what to expect, what will happen to her, or what she is going to have

to go through in all her years. They havent discovered the cause yet. They have

narrowed it down to gentics or something called congential CMV. They are leaning

more towards the CMV because of her other symptoms. She has a very small head,

(body in the 60th percential and head in the 1st) she is deaf on her right side,

and I wont know until August as to the extint of her sight problems, but we know

there are some because she cant see anything very close up. She is a very happy

baby and hardly ever cries. She eats fine and hardly ever spits up. Been

sleeping all night till 8 am since she was a month old. And she kicks her legs

and arms independently, stands on them and talks and everything. Im not sure if

there is some

advice anyone can give me as to how severe they think just by what I've typed. I

just need some peace of mind from Mom's with severe and mild cases. I dont know

anyone who is in my shoes besides you guys. Please help.

Tabitha

A very scared new mom

[Guest guest]

Thank you for your reply, Janell! Eli is barely on the growth charts also. At

his last check up he scored beneath the 5th percentile for height and weight.

He is adopted from Korea, so at first we thought that he was just small because

the Asian people are generally smaller than Caucasians, but his growth has

slowed down even more over the last couple years and he now weighs only 40 lbs

at age 6. I can understand completely about being nervous about sending your son

to kindergarten! Eli went to an ECSE (early childhood special ed) class last

year and that went pretty well,(it was only a half day class) but this year he

is in a full day elementary special ed class, and even though I had met with the

staff from his old and his new school back in June and we had discussed all of

his issues, it seems like now that he has been in school for a week, his teacher

is totally surprised and unprepared to deal with him! I am expecting a call

back tomorrow from the director of the program and we may end up pulling him out

and placing him somewhere else that can better meet his needs. Eli has been

having meltdowns at school a couple times each day and they have to send him to

the office to calm him down! I'm sure this is because he is just not

developmentally ready for this type of classroom. His teacher said it is like

having a 2 year old running around a kindergarten classroom. Well...it's not

like they did not know what his level of functioning was beforehand! Not to

mention the fact that he is still grieving the loss of his Daddy! (My husband

passed away very unexpectedly, about this time last year) I'm sorry...I guess I

just needed to vent a little bit! I hope your son's experience at his new

school will be a good one! Thanks again for responding!

>

> , Welcome to the group! My son is five and will be six in

December. He is non verbal but does do sign. He also is struggling with potty

training, he is starting to use the potty more often but still not very

consistant. As to date we have not experienced any seizures, by the grace of

god! starts kindergarten next Monday and boy am I nervouse! He's going

to a charter school that I found and I've been highly impressed on their

willingness to have meetings to get to know what needs. Up intell this

year he hasn't even been on the growth charts, he's now up to 20% for weight and

height. Janell

> Sent from my Verizon Wireless BlackBerry

>

[Guest guest]

Hi, We are only a couple hours east of you. My daughter is also adopted, very

tiny, and has BFP/BFPP depending on the neuro we chat with. She is 6.5 and was

potty trained at 5.5 shortly after starting keppra for seizures. She also has

ADD(or ADHD-inattentive type).

She is verbal and walks in a walker.

> >

>