A Couple of Questions

[Guest guest]

On Sat, 12 May 2001 sammisj_s@... wrote:

> Dear All:

>

> 1. How long does Lyme disease last after initial antibiotic

>

> treatment??

[ I am only answering some of these questions; I am not qualified

to do even these, and some of them are variable - this is an idiopathic

illness where individuals are differently effected and progress

differently with meds. ] +THE ARE ONLY PERSONAL EDUCATED GUESSES+

It is good to refer to Dr. B's guidelines at least.

Much has to do with HOW LONG one has had LYME to begin with; which also

means if one discovered the telltale " bull-eye " rash and got immediate

treatment. OR even if one noted " typical symptoms " [of which there is a

complete listing and people have some or all of them] and went to a Lyme

Literate MD " LLMD " who puts one on abx while awaiting teste results. The

longer the disease settles into the system it is longer in general to

effectively treat it.

>

> 2. Is anyone completely cured.

As I recall; this is related to the above question - length of

infection time makes it harder to " cure " .

>

> 3. What are the long lasting side affects of lyme.

Again as in the above - depending on what system of the body is

effected most and length of infection, there can be some long lasting side

effects - individuals differ.

>

> 4. Can a person die during a herxhiemer, is this a

> fatal disease even through antibiotic treatment?

>

I do not think so; thought I have know people hospitalized from

this (in the case of IV treatment at least) but I know of no fatalities

from lyme itself.

> 5. Why is there so much anxiety symptoms and muscle pain, or,

> are they separate. Which meds to use?

These are typical symptoms again making each person effected more

in one of them and less in another. I personally believe it also has to

do with WHICH co-infections are at work in the symptomology

I will not comment on meds. This is up to the LLMD.

PLEASE UNDERSTAND I AM * NOT * but a patient myself: others more

qualified may want to differ with me (hopefully) and refer you to

authorities. DO not take any of this as official advice I hope this

helps somewhat.

-GLEN from NJ

> Samm

>

<http://www.eclipse.net/~wolfsen>

[Guest guest]

Samm, I am going to reply by my own knowledge, which isnt much! LOL There

are several schools of thought concerning Lyme, I side with the Drs (

LLMDs ) that treat this day in and day out. Pepi

> 1. How long does Lyme disease last after initial antibiotic

>

> treatment??

I feel that Lyme should be treated untill at least 3 months after all

symptoms leave. If you are like me and have almost asympomatic lyme, then

treat untill no more herxs no matter the abx.

> 2. Is anyone completely cured.

I do not feel that we are cured, IF the Lyme wasnt caught within days, even

then maybe not. I feel that since the spirochete leaves the blood asap and

changes form to survive, than even a small colony left after tx can then

grow and make us relapse.

3. What are the long lasting side affects of lyme.

Eveyone is different in this, there are so many symptoms and we dont all

have the same. There are people whos lyme looks like

MS,FMS,ALS,Alz,Arthritis, Cardiac and more. For me it was mostly cardiac

before my treatment, with some joint pain.

> 4. Can a person die during a herxhiemer, is this a

> fatal disease even through antibiotic treatment?

Hmmmmmmm My LLMD doesnt like to start a person on the full dose of abx

because a bad herx is well, bad. I would think that if the person goes full

blast onto abx then yes, they can have complications. Lyme can be fatal if

not treated, for me there is no alternative, no matter how much I hate the

treatment.

> 5. Why is there so much anxiety symptoms and muscle pain, or,

> are they separate. Which meds to use?

Lyme attacks the nerves, including the brain, this can cause a myriad of

problems. I am lucky and have little to no depression. However I have very

bad fog and at times cannot spell my name. My muscle pain is treated with

Neurontin nightly, OxyIR, Ultram, Hydrocodon all only as needed, and that is

maybe 1-2 times a month.

My best advice is to know more than your Drs, keep a daily log, take

supplements, drink plenty of water and keep moving, even if its light

walking or Yoga.

www.lymenet.org www.lyme.org are great sites, the first has Dr B's 2000

Guidelines in the 'online library' Take care and good luck, Pepi

[Guest guest]

Lara, I have been contacts for patients that scheduled surgery within just a

couple of weeks. Don't think 18 months is right for the MGB. In SC there is

a doc who does the RNY. He has an 1 yr to 18 month waiting list. He also

requires a prolonged visit with a nutritionist, etc. Doesn't have the

education requests that Dr. R. has.

in SC

[Guest guest]

Lara,

No - there wasn't for the past 2 new pre-ops I talked to - in fact one

was scheduled within a week or so after his packet was receieved and it was

for the next month. Tell them to call at Dr R's office.

Carol H

MGB:01/07/2002 - Dr R

268/207

A couple of questions

> Hello Everybody,

> It has been a while since I posted. All is well. I need to know if

> anyone has Larice's phone number. I have e-mailed her several times

> and have not gotten a response from her. I know she is with her

> sister, but if we are going to have T-shirts I need her permission to

> use the MGB dancer. Also, I had a patient contact me that is trying

> to have the surgery, she says that she hears there is an 18 month

> waiting list. Does anyone know if this is the case???

> Love to all,

> Lara Akin

>

>

>

>

[Guest guest]

Hi Lara,

You are going to be really pushed to get the shirts done and receive

the money in time for the picnic. Maybe you could come up with

something different than the Spirit Dancer, since that was on them

last year. I really liked those but personally wouldn't mind

something different this year. Just don't get yourself stressed

out!! I'm sure what ever you decide will be fine.

Marie

> Hello Everybody,

> It has been a while since I posted. All is well. I need to know

if

> anyone has Larice's phone number. I have e-mailed her several

times

> and have not gotten a response from her. I know she is with her

> sister, but if we are going to have T-shirts I need her permission

to

> use the MGB dancer. Also, I had a patient contact me that is

trying

> to have the surgery, she says that she hears there is an 18 month

> waiting list. Does anyone know if this is the case???

> Love to all,

> Lara Akin

[Guest guest]

Dee

Coinfections are other infections that can be transmitted to you through the

same tick bite that gave you Lyme and at the same time. There are a few

coinfections an they are, Babesiosis,Erlichiosis, Bartonella,Rocky Mount

Spotted fever and there may be more but I can't remember them right now.

Alot of Lyme Disease patients are also infected with one or more of the

above in addition to the Lyme Disease which is why it's another reason to

have a GOOD LLMD who can check for all of the above as each has it's own

treatment protocol. Unfortunately for many of us these coinfections were not

realized until years after we had been sick and couldn't figure out why we

weren't getting better. If your'e new to Lyme Disease Please get checked for

all of the above.

When you say irregular periods wha do you mean? Can you give some

details please? Looks forward to hearing from you.

Robyn In SC

-- [ ] A couple of Questions

People have talked to me about coinfections - can someone please

explain to me what you mean by that. What is a coinfections and how

does it affect my Lymes.

Also a questions for the women with lymes - I have experienced a very

irregular menstrual cycle everytime I have a relapse - has anyone

else been through this?

Dee

[Guest guest]

Thanks for the info on Coinfections - I will speak to my doctor about

it when I go next week. As far as the irregular periods is concerned

I guess that they are not so much irregular as non existant. The

first bout of Lymes my periods were gone for 6 months - that is more

a concern then a compaint. Now that I know I am going for another

round I realized that it has been 2 1/2 months since my last period

and there is no risk of pregnancy - any one else experience this?

Dee

> Dee

> Coinfections are other infections that can be transmitted to you

through the

> same tick bite that gave you Lyme and at the same time. There are a

few

> coinfections an they are, Babesiosis,Erlichiosis, Bartonella,Rocky

Mount

> Spotted fever and there may be more but I can't remember them right

now.

> Alot of Lyme Disease patients are also infected with one or more of

the

> above in addition to the Lyme Disease which is why it's another

reason to

> have a GOOD LLMD who can check for all of the above as each has

it's own

> treatment protocol. Unfortunately for many of us these coinfections

were not

> realized until years after we had been sick and couldn't figure out

why we

> weren't getting better. If your'e new to Lyme Disease Please get

checked for

> all of the above.

> When you say irregular periods wha do you mean? Can you give

some

> details please? Looks forward to hearing from you.

> Robyn In SC

>

> -- [ ] A couple of Questions

>

> People have talked to me about coinfections - can someone please

> explain to me what you mean by that. What is a coinfections and how

> does it affect my Lymes.

>

> Also a questions for the women with lymes - I have experienced a

very

> irregular menstrual cycle everytime I have a relapse - has anyone

> else been through this?

>

> Dee

>

>

>

>

>

[Guest guest]

I can't say I have only thing with mine is the severe PMS I get and I always

seem to get real sik right after them. Well I should say Sicker...

-- [ ] A couple of Questions

>

> People have talked to me about coinfections - can someone please

> explain to me what you mean by that. What is a coinfections and how

> does it affect my Lymes.

>

> Also a questions for the women with lymes - I have experienced a

very

> irregular menstrual cycle everytime I have a relapse - has anyone

> else been through this?

>

> Dee

>

>

>

>

>

[Guest guest]

No, I can't say that I did. I did have alot of pelvic pain and chronic

infections.My Gyn. said it was PID. That was before I knew I had lyme. Of course

all of this is gone now. I do know that when a womans body is under alot of

stress it can mess up your normal cycles. If I were you I would pay a visit to a

good GYN. BK

dee_allen wrote:Thanks for the info on Coinfections - I will speak to my doctor

about

it when I go next week. As far as the irregular periods is concerned

I guess that they are not so much irregular as non existant. The

first bout of Lymes my periods were gone for 6 months - that is more

a concern then a compaint. Now that I know I am going for another

round I realized that it has been 2 1/2 months since my last period

and there is no risk of pregnancy - any one else experience this?

Dee

> Dee

> Coinfections are other infections that can be transmitted to you

through the

> same tick bite that gave you Lyme and at the same time. There are a

few

> coinfections an they are, Babesiosis,Erlichiosis, Bartonella,Rocky

Mount

> Spotted fever and there may be more but I can't remember them right

now.

> Alot of Lyme Disease patients are also infected with one or more of

the

> above in addition to the Lyme Disease which is why it's another

reason to

> have a GOOD LLMD who can check for all of the above as each has

it's own

> treatment protocol. Unfortunately for many of us these coinfections

were not

> realized until years after we had been sick and couldn't figure out

why we

> weren't getting better. If your'e new to Lyme Disease Please get

checked for

> all of the above.

> When you say irregular periods wha do you mean? Can you give

some

> details please? Looks forward to hearing from you.

> Robyn In SC

>

> -- [ ] A couple of Questions

>

> People have talked to me about coinfections - can someone please

> explain to me what you mean by that. What is a coinfections and how

> does it affect my Lymes.

>

> Also a questions for the women with lymes - I have experienced a

very

> irregular menstrual cycle everytime I have a relapse - has anyone

> else been through this?

>

> Dee

>

>

>

>

>

[Guest guest]

By now I'd expect others to have answered you. So if this duplicates the efforts

of others, it's because I didn't see (or may have forgotten already) answers.

Coinfections- Other tick borne diseases such as babesiosis, erlichiosis,

rickettsial fever, bartonella, mycroplasma and HHV-6

Will weaken you and make you sicker and the lyme infection harder to cure. Can't

help with the other problem.

Dave

[ ] A couple of Questions

People have talked to me about coinfections - can someone please

explain to me what you mean by that. What is a coinfections and how

does it affect my Lymes.

Also a questions for the women with lymes - I have experienced a very

irregular menstrual cycle everytime I have a relapse - has anyone

else been through this?

Dee

[Guest guest]

I have had chronic pelvic pain for a few years and just ignored it. Well

finally my llmd told me to go be checked. As it turns out I just had surgery

last week my right ovarie was swolen to the size of an orange and had a very

large cyst on it and was covered with endomitriosis which I have never had a

hystery of I have three children and also there were so many adhesion in my

abdomen and bowels and blatter that they were all atached and pulling everything

in the wrong direction it was pretty bad. I am pretty conviced considered

spirochetes will go for organs that the lyme did it and the ob said that my left

ovarie will be next. So please go get checked.

[ ] A couple of Questions

>

> People have talked to me about coinfections - can someone please

> explain to me what you mean by that. What is a coinfections and how

> does it affect my Lymes.

>

> Also a questions for the women with lymes - I have experienced a

very

> irregular menstrual cycle everytime I have a relapse - has anyone

> else been through this?

>

> Dee

>

>

>

>

>

[Guest guest]

Hi ,

Having ADHD does not directly affect one's ability to learn to

speak, but children with communication disorders have a higher

incidence of inattentiveness and hyperactivity. We know that many

children who have neurologic problems do not have just one problem,

but multiple overlapping signs and symptoms. A child can have a

speech and language impairment, sensory issues, ADHD, PDD.... Please

refer to http://www.cherab.org/information/adhd-speech.html for

excellent information on this subject. In JJ's case, he is

affected by the brain injury from the ACM1 that can impact on his

behavior, speech and language and even social interactions. Your

team of therapists will need to develop a behavioral plan with a

reward system to motivate him to sit and attend especially during

therapy sessions. He will need intensive speech and language therapy

and probably OT. Fish oils have helped some. I'm glad that his

surgery was successful and hopefully he will soon show progress in

all areas.

Sincerely,

Marilyn Agin, MD

> Hello to everyone,

> I haven't posted in a while - but here goes. A quick synopsis of

my

> son, JJ. He quit talking and eating properly after the age of 12

> months. We went through a summer speech program - he is now in

> early intervention. He was also dx'ed ACM1 (chiari malformation

1)

> and he had surgery to try and correct this on 2-11-03.

>

> In the meantime he has started to eat better and I THOUGHT

verbalize

> more. However, now I am not so sure. I am pushing early

> intervention for more speech therapy. They re-evaluated him today

> for his O/T. He will now start attending this. They are going to

> begin the brushing therapy with him and also a weighted vest once

a

> day. They are now leaning towards ADHD. Which they say cannot

> properly be diagnosed until later.

>

> My question to all of you and perhaps specifically, am I

right

> in assuming that the ADHD may affect his ability to speak? He is

so

> all over the place that I am thinking that he may not be able to

> concentrate on trying to " learn " how to speak again. This birth

> defect that he was born with was literally squeezing his brain and

> causing dents in his brain. His previous speech pathologist was

> treating him as if he had aphasia. And I am leaning towards that

> also since he did have a brain injury. Just wondering if anyone

has

> any knowledge of this or has gone through this.

>

> Thanking you all in advance,

> Kim - Mom to Carissa - age 9, " normal " and JJ, age 2.3 years,

ACM1,

> pdd-nos?, and who knows what else

[Guest guest]

Thank you Dr. Agin - I am hoping that by JJ being

enrolled in early intervention I have been doing the

right thing. They will be starting OT on him next

Thursday. This Tuesday they will be starting the

brushing therapy - and giving me methods for a sensory

diet at home since he is overly sensory seeking.

Thanks again for your response,

Kim - Mom to Carissa, age 9, and JJ, age 2.3 years,

ACM1, apraxia, pdd, SID?????

--- Marilyn Agin, MD@... wrote:

> Hi ,

>

> Having ADHD does not directly affect one's ability

> to learn to

> speak, but children with communication disorders

> have a higher

> incidence of inattentiveness and hyperactivity. We

> know that many

> children who have neurologic problems do not have

> just one problem,

> but multiple overlapping signs and symptoms. A

> child can have a

> speech and language impairment, sensory issues,

> ADHD, PDD.... Please

> refer to

> http://www.cherab.org/information/adhd-speech.html

> for

> excellent information on this subject. In JJ's

> case, he is

> affected by the brain injury from the ACM1 that can

> impact on his

> behavior, speech and language and even social

> interactions. Your

> team of therapists will need to develop a behavioral

> plan with a

> reward system to motivate him to sit and attend

> especially during

> therapy sessions. He will need intensive speech and

> language therapy

> and probably OT. Fish oils have helped some. I'm

> glad that his

> surgery was successful and hopefully he will soon

> show progress in

> all areas.

>

> Sincerely,

> Marilyn Agin, MD

[Guest guest]

In a message dated 5/28/2003 8:30:05 AM Pacific Daylight Time,

ljwilliams@... writes:

> Any thoughts on this would be appreciated. I don't know anything about

> hormones other than you don't want them out of balance! Thanks for any input

> you might have. Have a great day

Hi . I know here in the usa they have announced yesterday that taking

female hormones can give ya alhiezmers. Here is a link.

<A HREF= " http://news.ninemsn.com.au/nnhwatch/story_49012.asp " >HRT: new

concerns</A> <A

HREF= " http://news.ninemsn.com.au/nnhwatch/story_49012.asp " >http://news.ninemsn.c\

om.au/nnhwatch/story_49012.asp</A>

Pritchard

Live the Peace

<A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A>

( my web page)

<A HREF= " http://www.melungeons.com/articles/melungeon_music0403.htm " >Melungeon

Music</A> ( article)

[Guest guest]

Hi

I am also doing the cocktail by DR S and went the route of the

hormone testing.( still awaiting results)

I do know that the hormones he is using are different than what is

prescribed here as I am older than you and was ncerned about it. he

had said striol is what is safe and its not in the estrogens

prescribed here. He said it would not flare my lupus and not have

any side effects.He went to Canada for special training.

I am glad you are coming out of the flare.

I know for me I just went slower with it all but it seems to be

working!

Hang in there

Love

Marge

> Hi everyone,

> I had a glorious Memorial Day! My whole family, sisters and

parents, all came with their family's and cooked out at my house and

I didn't have to do a thing! They all pitched in and cooked and drove

the 2 hours to see me. What a treat! I hope you all were as blessed

as I was. We raised the flag and remembered our loved ones and heroes

and then enjoyed our freedom for the rest of the day.

> Today is the first time I'm back at the computer and a couple

of questions have come up. First, is it true that RA people have a

greater risk of heart attack? Second, is the the prednisolone that

Darren spoke of the same as the prednisone ( 5mg per day) that I'm

on? Dr. Sentef thought I should give this low dose a try to see if it

would help me lower my pain med thru this bad flare. After a week it

appears to have done that. He prescribed it for 30 days. I am feeling

much better.

> Also, he had me do a saliva hormone test and mail it off to a

lab in Oregon. He said he has found that a hormone imbalance is often

the reason a patient doesn't respond as well as they could to this

treatment. I'm waiting on the results. I am 43 so I guess I could

start to see hormone changes soon, though I don't have any indication

of that yet. Any thoughts on this would be appreciated. I don't know

anything about hormones other than you don't want them out of

balance! Thanks for any input you might have. Have a great day,

> P. S. I don't know why my name line shows my husbands name, Lee,

instead of mine. Can I change that for this group?

>

>

[Guest guest]

Dear ,

My daughter, Patti, is going to do the saliva test from Dr. Sentef

too. She has to do it on the 19th day after her last period, which

will be about June 8. She has systemic scleroderma as well as

multiple sclerosis. When a woman with M.S. gets pregnant, she

goes into remission the entire 9 months. The hormone in question,

the level of which rises sharply during pregnancy, is either estriol

or estridiol. (Can't remember which.) Dr. Sentef and a pharmacist

friend of his have developed a high-potency cream made with which-

ever hormone it is. It is the M.S. that he is thinking the hormone

might help. When the lab figures out what yours and my

daughter's hormone levels are (especially the one in question), Dr.

Sentef will know how much and how often you should apply the

cream to your wrists.

Let us know how you do, and we will do the same.

Ellen McCool

rheumatic A couple of questions

> Hi everyone,

> I had a glorious Memorial Day! My whole family, sisters and parents,

all came with their family's and cooked out at my house and I didn't have to

do a thing! They all pitched in and cooked and drove the 2 hours to see me.

What a treat! I hope you all were as blessed as I was. We raised the flag

and remembered our loved ones and heroes and then enjoyed our freedom for

the rest of the day.

> Today is the first time I'm back at the computer and a couple of

questions have come up. First, is it true that RA people have a greater risk

of heart attack? Second, is the the prednisolone that Darren spoke of the

same as the prednisone ( 5mg per day) that I'm on? Dr. Sentef thought I

should give this low dose a try to see if it would help me lower my pain med

thru this bad flare. After a week it appears to have done that. He

prescribed it for 30 days. I am feeling much better.

> Also, he had me do a saliva hormone test and mail it off to a lab in

Oregon. He said he has found that a hormone imbalance is often the reason a

patient doesn't respond as well as they could to this treatment. I'm waiting

on the results. I am 43 so I guess I could start to see hormone changes

soon, though I don't have any indication of that yet. Any thoughts on this

would be appreciated. I don't know anything about hormones other than you

don't want them out of balance! Thanks for any input you might have. Have a

great day,

> P. S. I don't know why my name line shows my husbands name, Lee, instead

of mine. Can I change that for this group?

>

>

[Guest guest]

Hi Ellen,

Thanks! Thats alot more info than I absorbed in my conversation with him

though I do remember him mentioning that pharmacist and a patient that was

probably your daughter. Try as I might I don't always retain everything he

tells me. I mailed mine in tuesday before last so maybe I'll hear something

soon. I'll let you know.

Thanks Again,

rheumatic A couple of questions

>

>

> > Hi everyone,

> > I had a glorious Memorial Day! My whole family, sisters and

parents,

> all came with their family's and cooked out at my house and I didn't have

to

> do a thing! They all pitched in and cooked and drove the 2 hours to see

me.

> What a treat! I hope you all were as blessed as I was. We raised the flag

> and remembered our loved ones and heroes and then enjoyed our freedom for

> the rest of the day.

> > Today is the first time I'm back at the computer and a couple of

> questions have come up. First, is it true that RA people have a greater

risk

> of heart attack? Second, is the the prednisolone that Darren spoke of the

> same as the prednisone ( 5mg per day) that I'm on? Dr. Sentef thought I

> should give this low dose a try to see if it would help me lower my pain

med

> thru this bad flare. After a week it appears to have done that. He

> prescribed it for 30 days. I am feeling much better.

> > Also, he had me do a saliva hormone test and mail it off to a lab in

> Oregon. He said he has found that a hormone imbalance is often the reason

a

> patient doesn't respond as well as they could to this treatment. I'm

waiting

> on the results. I am 43 so I guess I could start to see hormone changes

> soon, though I don't have any indication of that yet. Any thoughts on this

> would be appreciated. I don't know anything about hormones other than you

> don't want them out of balance! Thanks for any input you might have. Have

a

> great day,

> > P. S. I don't know why my name line shows my husbands name, Lee,

instead

> of mine. Can I change that for this group?

> >

> >

[Guest guest]

Actually, I think the hormone is progesterone. I could be wrong (I'm not

an expert on these things but have been reading up on natural hormone

replacement). Progesterone is very high during pregnancy, in fact, I

believe the amniotic fluid is loaded with it. Progesterone cream can be

bought OTC, without a prescription, although it's probably best to get

it by prescription at a compounding pharmacy, to be sure of potency.

I would be really surprised if Dr. Sentef supplemented with estrogens,

since high estrogen is implicated in breast and uterine cancers.

Estradiol is the " bad " estrogen, estriol is thought to be " good " or at

least benign in terms of cancer. Could I ask you to let me know what you

find out about this? I am curious to know what Dr. Sentef is doing (am

thinking about making an appt with him).

Best regards,

EllenMcCool wrote:

> Dear ,

>

> My daughter, Patti, is going to do the saliva test from Dr. Sentef

> too. She has to do it on the 19th day after her last period, which

> will be about June 8. She has systemic scleroderma as well as

> multiple sclerosis. When a woman with M.S. gets pregnant, she

> goes into remission the entire 9 months. The hormone in question,

> the level of which rises sharply during pregnancy, is either estriol

> or estridiol. (Can't remember which.) Dr. Sentef and a pharmacist

> friend of his have developed a high-potency cream made with which-

> ever hormone it is. It is the M.S. that he is thinking the hormone

> might help. When the lab figures out what yours and my

> daughter's hormone levels are (especially the one in question), Dr.

> Sentef will know how much and how often you should apply the

> cream to your wrists.

>

> Let us know how you do, and we will do the same.

>

> Ellen McCool

> rheumatic A couple of questions

>

>

> > Hi everyone,

> > I had a glorious Memorial Day! My whole family, sisters and

> parents,

> all came with their family's and cooked out at my house and I didn't

> have to

> do a thing! They all pitched in and cooked and drove the 2 hours to

> see me.

> What a treat! I hope you all were as blessed as I was. We raised the flag

> and remembered our loved ones and heroes and then enjoyed our freedom for

> the rest of the day.

> > Today is the first time I'm back at the computer and a couple of

> questions have come up. First, is it true that RA people have a

> greater risk

> of heart attack? Second, is the the prednisolone that Darren spoke of the

> same as the prednisone ( 5mg per day) that I'm on? Dr. Sentef thought I

> should give this low dose a try to see if it would help me lower my

> pain med

> thru this bad flare. After a week it appears to have done that. He

> prescribed it for 30 days. I am feeling much better.

> > Also, he had me do a saliva hormone test and mail it off to a lab in

> Oregon. He said he has found that a hormone imbalance is often the

> reason a

> patient doesn't respond as well as they could to this treatment. I'm

> waiting

> on the results. I am 43 so I guess I could start to see hormone changes

> soon, though I don't have any indication of that yet. Any thoughts on this

> would be appreciated. I don't know anything about hormones other than you

> don't want them out of balance! Thanks for any input you might have.

> Have a

> great day,

> > P. S. I don't know why my name line shows my husbands name, Lee,

> instead

> of mine. Can I change that for this group?

> >

> >

[Guest guest]

In a message dated 5/30/2003 8:20:15 AM Pacific Daylight Time,

ellenmccool@... writes:

> . First, is it true that RA people have a greater risk

> of heart attack?

Hi I am interested in this question as well, as I have AS and I had read in

Norman Cousins book, I think* < in other words, who knows? > that AS pts

usually go through hell with the body stiffening up so you cant move any more,

your

staring down at the side walk, and then if that ain't enough the old ticker

goes.

As a Medicaid patient, when an ambulance is called you are taken to the

closest hospital, period. The closest hospital to where my body said no more was

this private expensive hospital filled with the cream of the crop of Doctors

from India.

Evidentially the good Indian Doctors and their private hospital who saved

my behind when my kidney was stressed to the maxed by a blocked further with

scar tissue and a kidney stone from, well you know, they must have heard the

same thing for the kidney Doctor called up his buddy, the Heart Surgeon for

some Saturday morning charity surgery, on an Ankylosing Spondylitis patient

after a round of morning golf, while waiting for me to digest my breakfast.

Of course being a patient of a Dr Thacker, who was a rheumologist at that

same private hospital, and was a big fan of Dr. Mercola's in Riverside, and

his therapy, and in fact attended Rheumatic meetings with him so he said, did

not curb the enthusiasm of the surgical team. Out in Victorville, it is said

this one really rich guy, who was like the prince of the village or providence

or

something like that ( a Dr. Reddy ) moved to Victorville, and invited all the

best men from his village to come to the US and become Doctors and

specialists as well. An odd little cultural pocket in the middle of a desert,

but good

for the town folks and very good for me.

The point of this journey back a year ago was:::: I have a very low risk of

a heart attack. And trust me, they looked up one side and down the other

every which way and put me through a plethora of tests to make sure my heart was

in tip top shape. It is.

So not I do not worry so much about the stories of going by heart attack in

the end. I do not know if it is the antibiotics or what it is but I have low

bad colestoral high good colorestal, and a good strong heart. It beats a

little fast but not enough to be a problem so they say.

Hope this helps.

Ann Pritchard

[Guest guest]

Hi Ya'll.

When thinking about female hormones remember to take a close look at the

recent releases this week about female hormones and dementia Have some links,

please.

<A HREF= " http://news.google.com/news?hl=en & edition=usa & q=female+hormone " >Google

Search: female hormone</A>

<A

HREF= " http://www.wral.com/health/2230680/detail.html " >http://www.wral.com/health\

/2230680/detail.html</A>

<A HREF= " http://www.sbsun.com/Stories/0,1413,208~12588~1418748,00.html " >San

Bernardino County Sun - News</A>

<A

HREF= " http://www.sbsun.com/Stories/0,1413,208~12588~1418748,00.html " >http://www.\

sbsun.com/Stories/0,1413,208~12588~1418748,00.html</A>

Ann Pritchard

[Guest guest]

Dear ,

For certain it is either estriol or estridiol that he said this cream is

comprised of. As far as side effects, he says there are none. There

is something about it being absorbed through the skin rather than

I.V. or orally that renders it harmless.

But I'm wondering now, with your mentioning of progesterone being the

elevated hormone during pregnancy---I'm truly confused and unsure

about the premise for this whole procedure. Dr. Sentef tells us so

much in a short period of time, it's difficult to keep it all straight.

Sometimes I think we should take a tape recorder.

Ellen

rheumatic A couple of questions

> Hi everyone,

> I had a glorious Memorial Day! My whole family, sisters and parents,

all came with their family's and cooked out at my house and I didn't have to

do a thing! They all pitched in and cooked and drove the 2 hours to see me.

What a treat! I hope you all were as blessed as I was. We raised the flag

and remembered our loved ones and heroes and then enjoyed our freedom for

the rest of the day.

> Today is the first time I'm back at the computer and a couple of

questions have come up. First, is it true that RA people have a greater risk

of heart attack? Second, is the the prednisolone that Darren spoke of the

same as the prednisone ( 5mg per day) that I'm on? Dr. Sentef thought I

should give this low dose a try to see if it would help me lower my pain med

thru this bad flare. After a week it appears to have done that. He

prescribed it for 30 days. I am feeling much better.

> Also, he had me do a saliva hormone test and mail it off to a lab in

Oregon. He said he has found that a hormone imbalance is often the reason a

patient doesn't respond as well as they could to this treatment. I'm waiting

on the results. I am 43 so I guess I could start to see hormone changes

soon, though I don't have any indication of that yet. Any thoughts on this

would be appreciated. I don't know anything about hormones other than you

don't want them out of balance! Thanks for any input you might have. Have a

great day,

> P. S. I don't know why my name line shows my husbands name, Lee, instead

of mine. Can I change that for this group?

>

>

[Guest guest]

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

From: " EllenMcCool " <ellenmccool@...>

Dr. Sentef tells us so

> much in a short period of time, it's difficult to keep it all straight.

> Sometimes I think we should take a tape recorder.

>

> Ellen

Dr. Brown often taped the visits with his patients and then gave then the

tape.

Ethel

[Guest guest]

Hi Janelle

I'm and am also fairly new here. I'm American, my husband Italian and

we live in Italy with our 2 sons Marco (3) and Giulio (almost 1). Even here

in Italy if you say the dyspraxia everyone looks at you funny...it is not

well-known in general and I have found little info in Italian to help me

with vocabulary to discuss it intelligently with the medical community here.

Professor Michele Zappella is one of the leading autism experts here in

Italy and happens to live and work here in Siena. He saw Marco for about an

hour last December and suggested that he has verbal dyspraxia (aka apraxia)

to some degree. It has taken until the last week of May 2003 for us to get

in for outpatient observations in his dept at the hospital and while they

say he also exibits " autism-like " symptoms but is not autistic; my husband

can't recall what " diagnosis " they pronounced in the past two weeks - he

talked to the dr assigned to us just this morning but forgot what she said

by the time he recounted their conversation to me. From all that I have

researched over the last 7 months, I am convinced that he has some dyspraxia

issues along with some sensory integration ones. We are also seeing a

chiropractic expert in Applied Kinesiology and have been taking a series of

homeopathic remedies which have really helped " unblock " some of his nervous

system interferences. I cannot expand much on this science but it does

work - at least it has for Marco. We have just started him on Omega3+6

(www.metabolics.co.uk) which appears comparable to the proefa offered by

nordicnaturals and I am seeing small but significant improvements. We are

still in the midst of evals and setting up speech and motor therapies for

Marco - the Applied Kinesiology, Chiropractic and Omega oils are because I

have chosen to do them.

We speak two languages at home and my observations of Marco, which are now

100% supported by all the professionals we've seen in the past few months,

are that his delays are NOT due to his bilingual upbringing. I approached

my ped when he was 2.3 and she pounced on his bilingual upbringing as the

reason he was not yet understanding/saying words - she did so without even

asking about his developmental history...which for me was right on schedule,

even for making the talking sounds. Two months later, we asked her again -

her response was " boys talk later but Signora you are obviously worried so

let me recommend a private speech therapist " - again no developmental

history - nothing. The speech therapist identified immediately his

autistic-like behaviours but also questioned if he really had autism and

helped us rule out hearing problem, etc. while we bypassed our ped to get an

appt with Dr Zappella...a referral to him was also made by the Dr who tested

Marco's hearing due to Marco's behaviour during his visit.

I have defended our decision to continue speaking two languages (me Am

English and my husband and others Italian). The doctors here now support

this decision. Quite a few speech therapists here have " suggested " that we

drop one language .. i.e. English ... since Italian is the one he will

" need " for everyday living and learning more than one language at a time is

" confusing " (a myth - I learned French & Italian and some German

simultaneously as an adult and I didn't find it confusing) - according to

the bilingual families support groups, that is not necessary and we should

continue to expose him to both languages as this is the ideal time of life

to plant the seeds for his long term goal which is balanced bilingualism (or

MULTIlinguism). For us, speaking two languages is our " normal " . Marco

makes trips back to the US once or twice a year and has a need to

communicate with family back home. The doctors/neuropsychologists have also

said that Marco should at least be expanding his Am English vocabulary as

most infants who spend most of their time with one parent usually pick up

the speech of that parent and expand their vocabulary. Marco was not doing

in it in either language...I would have been quite pleased if he were mixing

two languages which is normal- at least he would be spitting out words. We

put him in Italian nursery school in Nov 2002 which helped his Italian

comprehension quite a bit but it has been a long road even with the

stimulation and socialization with other children his age (some of them are

also being raised bilingually but with German and Albanese). His strongest

language comprehension is still English since we are together 90 pct of the

time.

However, I have found that the UK seems to be quite strong in the

Dyspraxia/Apraxia info for the European Union. If you go to

www.google.co.uk and search for " dyspraxia " and you will find lots of links

in English. The most visited appears to be www.dyspraxiafoundation.org.uk

and it is quite helpful. I've looked at some of the others, too, and they

are insightful.

[Guest guest]

Hello Janelle,

My name is Kim and I live in Florida so I can't give you any specialists in

Germany, but I can give you some websites to go to that lists many signs and

symptoms of apraxia so you can read more about it and know what kinds of

questions to ask at the evaluation. Apraxia-kids.org, speech-express.com,

cherub.org (Cherub Foundation), speechville.com all come to mind. You can find

alot just by entering search terms such as " speech delay " " late talker "

" language delay " " apraxia " " dyspraxia " etc... You can also read alot about the

EFA's at the above websites. A good book to read re: apraxia and late talkers

is The Late Talker available at Amazon.com it also has info re: EFA's.

Another great book about EFA's is The LCP Solution by Dr. Stordy.

She also has a website at www.drstordy.com. I hope this helps. Things that made

me think my son had apraxia were: (1) he couldn't blow bubbles (2) couldn't

blow out candles (3) couldn't lick peanut butter off his upper lip (4) couldn't

make a pucker for a kiss or make a " fishy " face (5) had weak oral motor muscle

tone in general, etc...

Good luck with Helena! Kim

[ ] A couple of questions

Hello!

We're pretty new here to the group (I've been reading for a month or two) and

I'm not completely sure that I'm doing this right, but I hope so!

Our daughter, Helena, is 2 years and 1 month, has three (to the outside world)

recognizable words - Mama, Papa, and no - and about twenty " words " (consonants

or consonant-vowel combinations i.e. da, ma, aha, wuh etc.) that have meaning

and that we understand. She also has plenty of gestures and can communicate

fairly well. Otherwise she seems developmentally on track and so far we have

seen no signs of other " issues " cropping up. After reading this and other

websites, we as parents suspect verbal apraxia. We live in Germany and had been

speaking both German and English with her, although my husband now speaks almost

only English, due to her speech delay. We have seen one speech therapist who

said that she could simply be a late talker and that we would have to wait for

her to be 2.5 years old to know for sure. At that point, if she hasn't

progressed in her speech, we would be looking at a " specific language

impairment " .

I've been really impressed with the thoughtfulness and helpfulness of everyone

here in the group and would like to tap into it with three questions, if you

wouldn't mind. We would really appreciate any input anyone has to offer!

1.Helena is having her first " real " evaluation next Wednesday and I'd like to

ask for any suggestions of things we should look for, issues we should bring up,

questions we should have related to apraxia. I have a feeling that apraxia isn't

terribly well known here and want to be really informed and prepared. What kinds

of things should the doctors/speech therapists be looking for in Helena to

diagnose apraxia? What should we ask them about? And also in general, what are

good questions to ask?

2. Because apraxia seems less well known here in Germany, I'd really

appreciate knowing if anyone out there has any knowledge of or connection to

apraxia specialists in Germany or in the UK/Europe as a whole.

3. We'd like to get Helena started on ProEFA - it has seemed to help so many.

I just spoke to the European Nordic Naturals distributor (who himself has an

autistic child) and he recommended the ProDHA Junior because of the Vitamin A.

Does anyone have any experience with the ProDHA versus ProEFA? Any opinions as

to what would be better?

I'm sorry that this was so many questions, but I'd love to hear what anyone

has to say.

Thanks so much in advance,

Janelle and Helena (2 years and maybe verbal apraxia)

[Guest guest]

Janelle: Welcome to this group. My son, also had his first

evaluation at 25 months old, and we went into that eval. blindly.

Not that it was bad, but it would have been nice to know some things

up front. Until that evaluation, I had not even heard of apraxia,

so you are already ahead of the game.

I would write down everything that your daughter does. The

evaluators will be asking you specific questions about your daughter,

at the same time, getting her to do " things " for them, and of course,

you are distracted into helping your daughter. Really tough on mom!

Bring a list of things that Helena does, her favorite toys, favorite

books, movies, sleep habits, eating habits, what she likes to eat,

words she uses, overall disposition, etc. Have this available to

give them (make a copy to keep for yourself), so that if you did not

cover some things, they can read that later. I did this for my

son's second evaluation, and it proved helpful.

If you think that your daughter may not participate, bring in

some " comfort " item, like a favorite blanket. You want her to be

comfortable. This again helped for me, and of course I was a

nervous wreck.

That's all I can think of, although you will probably receive great

advice from others. Good luck and let us know how it goes.

Kim

--- In , janelle.ramaley@t...

wrote:

> Hello!

> We're pretty new here to the group (I've been reading for a month

or two) and I'm not completely sure that I'm doing this right, but I

hope so!

>

> Our daughter, Helena, is 2 years and 1 month, has three (to the

outside world) recognizable words - Mama, Papa, and no - and about

twenty " words " (consonants or consonant-vowel combinations i.e. da,

ma, aha, wuh etc.) that have meaning and that we understand. She also

has plenty of gestures and can communicate fairly well. Otherwise

she seems developmentally on track and so far we have seen no signs

of other " issues " cropping up. After reading this and other websites,

we as parents suspect verbal apraxia. We live in Germany and had

been speaking both German and English with her, although my husband

now speaks almost only English, due to her speech delay. We have seen

one speech therapist who said that she could simply be a late talker

and that we would have to wait for her to be 2.5 years old to know

for sure. At that point, if she hasn't progressed in her speech, we

would be looking at a " specific language impairment " .

>

> I've been really impressed with the thoughtfulness and helpfulness

of everyone here in the group and would like to tap into it with

three questions, if you wouldn't mind. We would really appreciate any

input anyone has to offer!

>

> 1.Helena is having her first " real " evaluation next Wednesday and

I'd like to ask for any suggestions of things we should look for,

issues we should bring up, questions we should have related to

apraxia. I have a feeling that apraxia isn't terribly well known here

and want to be really informed and prepared. What kinds of things

should the doctors/speech therapists be looking for in Helena to

diagnose apraxia? What should we ask them about? And also in

general, what are good questions to ask?

>

> 2. Because apraxia seems less well known here in Germany, I'd

really appreciate knowing if anyone out there has any knowledge of or

connection to apraxia specialists in Germany or in the UK/Europe as a

whole.

>

> 3. We'd like to get Helena started on ProEFA - it has seemed to

help so many. I just spoke to the European Nordic Naturals

distributor (who himself has an autistic child) and he recommended

the ProDHA Junior because of the Vitamin A. Does anyone have any

experience with the ProDHA versus ProEFA? Any opinions as to what

would be better?

>

> I'm sorry that this was so many questions, but I'd love to hear

what anyone has to say.

> Thanks so much in advance,

> Janelle and Helena (2 years and maybe verbal apraxia)

>

>

>