NEW TO YOUR GROUP

[Guest guest]

MIndy,

I've not had flu shots for years because vaccinations/flu shots are known to

bring back the Lyme symptoms.

Rita

[Guest guest]

Rita,

Is there any documented information on this that I can show my doctor?

I've researced the flu shot and vaccinations on the internet, but

cannot seem to come up with any real proof that this is true. I only

have my experience and now yours. I would love to show some written

proof from a medical article to my doctor who thinks that I am

experiencing stress and Fibromyalsia symptoms. <<SCREAM>> Gotta love

lyme illiterate doctors...NOT!! I am so tired of hearing that

everything I am experiencing is " all in my head " .

Thanks for responding to my post.

Best Regards,

Mindy

> MIndy,

>

> I've not had flu shots for years because vaccinations/flu shots are

known to

> bring back the Lyme symptoms.

>

> Rita

[Guest guest]

Mindy,

I was the sickest I had been ever with the Lyme when I did get the flu shot. It

was awful so I know how you feel. My Lyme support group just got done talking

about this thursday. One gal was a nurse and said it is a very bad thing when

she had hers too....so this must be a common thing. Best of luck and wishes.

Cyntha Landon PA, Lititz

[ ] New to your group

Hi. My name is Mindy. I live in Southern California. I'm 40, Female.

I was bitten by a tick when I was 11. 3 years ago, I was treated for

Lyme Disease and thought it was behind me. About 4 months ago, I had

a flu shot and started having symptoms of Lyme Disease again shortly

afterwards. The last few weeks I feel as if it is trying to destroy

my body. I have pain and inflammation in my eyes, severe headaches,

pain, numbness and tingling in my face, arms, legs and feet.

My PCP and my neurologist think that it is Fibromyalgia and stress

causing all my problems and refuse to believe it is Lyme. My LLMD (my

endocrinologist who specializes in Lyme Disease treatment) is trying

to get me back on track with medication again.

I was just wondering if I am the only one to have had a Lyme

" relapse " after a flu shot??? Have any of you or anyone you know had

this happen to them?

Thanks,

Mindy

[Guest guest]

Mindy,

Art Doherty's geocities Lyme site may give you some help with that.

Rita

[Guest guest]

Other places to start are lymefnd.org or lymesite.com

Rita

[Guest guest]

Hi! Your son sounds very much like mine, and I also felt sick w/

recognition when I first came upon the Apraxia website and realized I was

reading about my son. When I had evaluated by Early Intervention

at 27 mos (he is 34 mos now), they also basically said it was a severe

expressive speech delay.... but I still felt there was something else

wrong. If I were you I would make an appmnt w/ an experienced SLP and see

what they say after observing Owen. My SLP was the one who initially

diagnosed the apraxia when he was 30 mos old, and then we took Ben to a

neurodevelopmental pediatrician, who confirmed it. His hearing was tested

and is normal. Once you have that diagnosis (if he does indeed have

apraxia) it will help in terms of getting your son into your school

district's preschool disabled program once he turns 3. (I hate the label

'disabled' but if they will help my son talk then they can call him

whatever they want....) We are waiting to have Ben's formal evaluation

done this month, but the school seems to be operating on the assumption

that w/ his diagnosis from the neurodev. dr, he will get in. Once hour a

week of EI therapy ay not be enough for your son to make any

improvement. Ben has 2 hrs a week from EI and also 30 min private therapy

that we pay for. In the 6 mos he has been in therapy (and on pro-EFA) we

have seen *small* improvements, the rate of progress is painstakingly

slow...but I'm glad he is getting therapy and that we 'caught' this early.

Good luck--

-Lis, Brittany and (34 mos, severe verbal apraxia)

At 08:04 PM 1/6/2003 +0000, you wrote:

>Hello Everyone,

>

>I am new to your group. I was researching reasons for speech delays

>in children and stumbled upon Apraxia website. I had never heard of

>this before and my curiosity was piqued. I feel like the lightening

>bolt struck as I was reading through website. I have had my son

>Owen, 31 months, evaluated at our local Developmental Evaluation

>Center, and they have told us it is just normal speech delay. But I

>am now wondering...One of the " symptoms " that really struck a nerve

>were switching sounds around in words. The only way I could

>describe this to our evaluators was that it was almost like speech

>dyslexia for lack of a better way to describe. Owen does lots of

>this, ex. up is baa, horse is saa, etc. Words that are 2 syllables

>are shortened to one with a vowel sound at the end, ex. apple is pa,

>outside is siii, etc. Also, almost all words are ended in a vowel

>sound. These were all concerns I shared during evaluation process.

>

>Putting together 2 words is almost unheard of, and when it does

>occur, Owen really has to concentrate. I have also noticed little

>to no change in tone of voice between words. When said together, no

>change of inflection. But, he does cahnge tone of how single words

>are said when asking a question, ex, outside is said " siii? "

>

>I could go on and on, but the bottom line is, we are just doing 1

>hour a week with an early interventionist and I want to make sure we

>are going down the right path. Am I on to something with Apraxia or

>am I barking up the wrong tree? If it sounds to you like I am maybe

>on the right track, what is my next move?

>

>I am hoping to gain some insight into this issue and aggressively

>help my child before he enters school, playmates, etc. I certainly

>don't want him labled learning disabled or slow, and I am also

>afraid that ADHD may be stuck to him, as his frustration at not

>being understood sometimes causes him to act out. I am looking

>forward to any help your group can offer, as I know that sometimes

>other parents are your strongest allies and best source of

>information in these situations.

>

>Thank you in advance for letting me be a part of this group and for

>your guidance.

>

>Kathleen, SAHM to:

>Owen 2 1/2

>Shauna 6 mos.

>

>PS - 2 other after-thoughts: Evaluators swear up and down that

>hearing and overproduction of ear-wax are our culprits, but hearing

>checked out fine, and Owen has always produces lots of ear wax. I

>don't buy this one. And he seems to understand almost everything we

>say, with the exception of understanding prepositions.

>

>

>

>

>

>

>

[Guest guest]

Hi Kathleen and welcome!

Sadly there are many professionals out there that are not familiar

enough with apraxia and it is often overlooked. Ear wax is a new one

especially with a normal hearing test! I asked that question as well

when we saw the audioligist. Our first EI SLP had no idea what

apraxia was and until he was diagnosed I feel we lost 4 months doing

useless therapy. You can ask for another SLP. I did and was thrilled

with the next one. What type of therapy is the SLP doing? Does he/she

work on oral motor as well, blowing bubbles, horns, moving the tongue

side to side, etc... If you don't see any change by all means ask for

a new SLP.

At 3 my son had a handful of words, not very spontaneous and he too

would drop endings or beginnings of words. Putting 2 words or even 2

syllables together was unheard of. With the right therapy and SLP he

began making progress.

Your best bet is to get an independent evaluation either through

insurance or out of pocket with someone experienced in apraxia. A

good place to start is a Children's Hospital, university or even the

PROMPT Institute. PROMPT is a therapy technique that has been found

to help apraxic children. Our SLP uses it on other patients as well

and although she only was trained a year ago she sees a big

difference in this approach. They can give you a list of SLPs who

have taken their training classes and are certified.

Also his agressiveness may also be a sign of his frustration. In

terms of him being labelled, we all feel that way. My son has done

wonderful in a pre-school " disabled " program and looking back I

realize for him what a mistake it would have been to send him to any

of the local schools where he would not have gotten the attention he

needed. He will probably be in regular kindergarten next year with

pullouts for speech and perhaps OT. My feeling now is better

to " label " him now then later.

In terms of ADHD, only a Dr. can diagnose that. Maybe a visit to a

developmental pediatrician or a neurologist can help put all the

pieces together for you. This helped us alot and helped determine

what therapies were necassary.

It is not easy having a little one who isn't talking but without

proper help it will be even harder.

Sounds like you are doing great by doing your homework and trying to

get to the bottom of your son's issues. Hang in there and remember no

one knows him like you do!

Please write if you have any more questions.

Mom to 4.6 and 2.10

> Hello Everyone,

>

> I am new to your group. I was researching reasons for speech

delays

> in children and stumbled upon Apraxia website. I had never heard

of

> this before and my curiosity was piqued. I feel like the

lightening

> bolt struck as I was reading through website. I have had my son

> Owen, 31 months, evaluated at our local Developmental Evaluation

> Center, and they have told us it is just normal speech delay.

[Guest guest]

Hi

If you are comfortable with what you have read about enzymes, I would

consider trying them because if they work for your child, you will be

one happy momma!!!! We did the diet for one year - the whole family -

and it was not easy (off dozens of foods). You may want to read

through the Files section here, then post further questions:

/files/

If you think that dairy is a problem, then something like Peptizyde

could help. If you think phenols are a problem, then something like

No-Fenol could help. Just be sure to only start one of them at a

time and follow the dosing schedule.

I am really ready for my kids to get over the flu. They had not been

sick for a long time, but this is a particularly bad strain of flu

with fever and extreme weakness and almost everyone around here has

had it and it lasts up to two weeks!

Hang in there and post again with questions if this was not helpful

enough,

> My 2 1/2 year old daughter hasn't been offically diagnosed with

> autism. We go to a Dev. Ped. in a couple of months. She used to

talk

> andpoint at objects but no more. She had a reaction to the MMR

(105

> fever and rash). But her most recent issue is the sleep pattern. To

> hyped up for a nap(eventhough I know she is tried) hard to get to

> sleep at night and up a couple of hours in middle of the night

> babbling and some laughing.( she is currently getting ST and OT)

> I took her off of dairy and cut back on phenols last week. Has it

> helped? I really can't tell but it has stressed my family out. She

> currently has a fever and cold so I can't tell if it has helped.

> If you can give advice to a stressed out MOM. I have been on Danas

> site and houstonni. I am just overwhelmed by all the info.

> Thank you.

> Bond momlisab@h...

[Guest guest]

Thank you for writing me back. I don't know if I feel comfortble about

starting any of this. I am still trying to come to terms that my child is

different.

You said you did the diets for a year. GF and CF I assume. But not now. Did

you replace diet with enzymes?

Thank you

>From: " Kelley <ckelley100@...> " <ckelley100@...>

>Reply-

>

>Subject: Re: New to your group

>Date: Thu, 16 Jan 2003 00:48:41 -0000

>

>Hi

>

>If you are comfortable with what you have read about enzymes, I would

>consider trying them because if they work for your child, you will be

>one happy momma!!!! We did the diet for one year - the whole family -

> and it was not easy (off dozens of foods). You may want to read

>through the Files section here, then post further questions:

>

> /files/

>

>If you think that dairy is a problem, then something like Peptizyde

>could help. If you think phenols are a problem, then something like

>No-Fenol could help. Just be sure to only start one of them at a

>time and follow the dosing schedule.

>

>I am really ready for my kids to get over the flu. They had not been

>sick for a long time, but this is a particularly bad strain of flu

>with fever and extreme weakness and almost everyone around here has

>had it and it lasts up to two weeks!

>

>Hang in there and post again with questions if this was not helpful

>enough,

>

>

>

>

> > My 2 1/2 year old daughter hasn't been offically diagnosed with

> > autism. We go to a Dev. Ped. in a couple of months. She used to

>talk

> > andpoint at objects but no more. She had a reaction to the MMR

>(105

> > fever and rash). But her most recent issue is the sleep pattern. To

> > hyped up for a nap(eventhough I know she is tried) hard to get to

> > sleep at night and up a couple of hours in middle of the night

> > babbling and some laughing.( she is currently getting ST and OT)

> > I took her off of dairy and cut back on phenols last week. Has it

> > helped? I really can't tell but it has stressed my family out. She

> > currently has a fever and cold so I can't tell if it has helped.

> > If you can give advice to a stressed out MOM. I have been on Danas

> > site and houstonni. I am just overwhelmed by all the info.

> > Thank you.

> > Bond momlisab@h...

>

_________________________________________________________________

The new MSN 8: smart spam protection and 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

Hi !

I hope your little one gets over the flu soon. I remember when my

older son was little, probably less than one year old, and I went to

get him from his nap. He was literall fire-engine red and I about

passed out when we found his temp was 105. He didn't move or make

any noise (which was scary if you knew that noisy little guy). We

rushed him to the emergency room and it seemed like 3 years before

they called our name. They gave him antibiotic for an ear infection

gone out of control. Little did I know at that point I should have

invested in antibiotic stock at the rate we would be using it.

At this point, don't try to absorb everything because lots of it you

may not need. I chose to use Peptizyde enzymes instead of

eliminating foods because I think it is the healthiest and simplest

alternative for my family. Food eliminations can be incredibly

stressful. My boys were in school by the time they came out and they

were not happy at all. They didn't like being singled out

as 'different' because of food all the time.

You can try the enzymes with the investment of about 1 bottle and 3-

4 weeks. Then if it doesn't work out you can start the more involved

(and often much more expensive) route of food eliminations.

Anyway, just ask questions as you need answers and that will help

streamline the information load.

Good luck, and I am glad you are here.

.

> Thank you for writing me back. I don't know if I feel comfortble

about

> starting any of this. I am still trying to come to terms that my

child is

> different.

> You said you did the diets for a year. GF and CF I assume. But not

now. Did

> you replace diet with enzymes?

> Thank you

>

>

>

>

>

>

>

> >From: " Kelley <ckelley100@c...> " <ckelley100@c...>

> >Reply-

> >

> >Subject: Re: New to your group

> >Date: Thu, 16 Jan 2003 00:48:41 -0000

> >

> >Hi

> >

> >If you are comfortable with what you have read about enzymes, I

would

> >consider trying them because if they work for your child, you

will be

> >one happy momma!!!! We did the diet for one year - the whole

family -

> > and it was not easy (off dozens of foods). You may want to read

> >through the Files section here, then post further questions:

> >

> > /files/

> >

> >If you think that dairy is a problem, then something like

Peptizyde

> >could help. If you think phenols are a problem, then something

like

> >No-Fenol could help. Just be sure to only start one of them at a

> >time and follow the dosing schedule.

> >

> >I am really ready for my kids to get over the flu. They had not

been

> >sick for a long time, but this is a particularly bad strain of flu

> >with fever and extreme weakness and almost everyone around here

has

> >had it and it lasts up to two weeks!

> >

> >Hang in there and post again with questions if this was not

helpful

> >enough,

> >

> >

> >

> >

> > > My 2 1/2 year old daughter hasn't been offically diagnosed with

> > > autism. We go to a Dev. Ped. in a couple of months. She used

to

> >talk

> > > andpoint at objects but no more. She had a reaction to the MMR

> >(105

> > > fever and rash). But her most recent issue is the sleep

pattern. To

> > > hyped up for a nap(eventhough I know she is tried) hard to get

to

> > > sleep at night and up a couple of hours in middle of the night

> > > babbling and some laughing.( she is currently getting ST and

OT)

> > > I took her off of dairy and cut back on phenols last week.

Has it

> > > helped? I really can't tell but it has stressed my family out.

She

> > > currently has a fever and cold so I can't tell if it has

helped.

> > > If you can give advice to a stressed out MOM. I have been on

Danas

> > > site and houstonni. I am just overwhelmed by all the info.

> > > Thank you.

> > > Bond momlisab@h...

> >

>

>

> _________________________________________________________________

> The new MSN 8: smart spam protection and 2 months FREE*

> http://join.msn.com/?page=features/junkmail

[Guest guest]

>>But her most recent issue is the sleep pattern. To

> hyped up for a nap(eventhough I know she is tried) hard to get to

> sleep at night and up a couple of hours in middle of the night

> babbling and some laughing.( she is currently getting ST and OT)

> I took her off of dairy and cut back on phenols last week.

Do you give supplements? Might want to remove those and see if they

are causing hyper, or list them and people can give you ideas.

Some phenols are worse offenders for sleep issues than others. You

say you " cut back " . Which ones are you still giving?

Also, yeast can mimic phenol symptoms

http://www.danasview.net/yeast.htm

Dana

[Guest guest]

In a message dated 6/22/2003 12:14:59 AM Central Daylight Time,

taketimeoff@... writes:

> I recently was bitten by a tick (about 4 weeks ago)and within 4 or 5

> days developed a red ring about 1/4 inch thick with a clear area in

> the middle between the ring and the bite. It itched only a little

> and expanded slightly to an outside diameter of about 2 inches. I

> had never seen anything like it before. In retrospect, it looked

> very much like the erythema migrans characteristic of Lyme disease

> but its presentation was muted compared to pictures I saw on the

> internet. I treated it with hydrocortisone cream for about two days

> and it disappeared. I ignored the episode until yesterday when I

> saw a program on CNN about lyme disease and looked at a couple web

> sites they recommended. That's when I saw the pictures of erythema

> migrans and was shocked at the similarity. My doctor seems a little

> ambivalent about treating me, but he decided on 20 days of Ceftin

> 500mg twice a day, just to be safe. Personally, I wish I could be

> talked out of it. The weird little rash was my only symptom. I have

> had no fever or constitutional symptoms at all.

>

> I would be interested in your opinions on whether this really sounds

> like lyme disease or just my overactive imagination.

>

I urge you to read Dr. Burrascano's DIAGNOSTIC HINTS AND TREATMENT GUIDELINES

FOR LYME AND OTHER TICK BORNE ILLNESSES

<A

HREF= " http://www.ilads.org/burrascano_1102.htm#treatment " >http://www.ilads.org/b\

urrascano_1102.htm#treatment</A>

Dr. Burrascano is a well know lyme literate physician.

I too was tick bit and had the bullseye rash with no other symptoms till

later down the road. My general physician gave me only 2 weeks of Doxicycline.

That was in 1990. My lyme literate physician now says that doseage was only

enough to drive the Lyme bacteria dormant for a period of time to later

reappear.

I now laugh when I hear people say they were reinfected. Because I don't

actually believe most people get reinfected. I believe they still had the

bacteria laying in dormancy and it just later decides to come out and attack

again

due to stress and many other factors.

The best time to try to put Lyme disease at rest for good is now if you have

just gotten the rash. Take it very serious and take every antibiotic you can

get out of your doctor and then more if you can get it. This is just my

personal opinion though. I was much like you in 1990 even though my husband

worried about it. I thought he was the paranoid one. Not anymore though. I

learned a little too late. I also learned not to totally trust my general

physicians

for they have no idea how serious this is.

Reading Dr. Burrascano's guidelines will help you and your doctor more than

anything. Just be aware in the years to come if you do get sick and they try

throwing one of their many other diseases that Lyme can imitate at you that

chances are it is Lyme. It would astound you to hear all the different things

lyme can imitate. MS, Lupus and Fibromyalgia just to name a very few. Others on

this list can give you even more diseases it can imitate. These are just the

ones I have experienced myself. No way do I believe I have ever had the

other diseases since I got totally well once and now am having a relapse after 4

years. Going to my Lyme literate physician again the 30th of this month

and I can't wait. I hope I can put it back in remission once again.

Take care and I wish you well,

Janis

[Guest guest]

<<<<<<<I now laugh when I hear people say they were reinfected.

Because I don't actually believe most people get reinfected.>>>>>>>

I'm one of the few that truly has been reinfected. The ticks were

sent out each time and came back positive for lyme. However I have

beaten it each time. The first was the longest because I went mxdx

for such a long time.

Conniek nwnj

When our bodies & minds are out of balance........we suffer!

Leave no stone unturned, research!......The mind is a powerful tool!

[Guest guest]

Hi Charlene and welcome,

Hope the group helps. I take it you are not yet seeing a Rheumatologist. See

if you can get your doctor to refer you to one. You never know, you might be

put on a drug that can help with your P and PA.

Good luck,

[Guest guest]

You need to see a rheumatologist! They can treat more than just the

skin like dermatologist can. They treat the whole body. There are

treatments out there that can help. My name is keli, i'm 25 was

diagnosed about almost 5 years ago, have been to the point where I

couldn't even get out of bed without assistance, that's how bad the

pain can get. Now I'm on Enbrel and vioxx and can function fairly

well, just a lot of fatigue. I wish PA was the only thing I have but

there are others so it's not all that much fun. Try not to get too

depressed about the PA, I know how you feel as I was diagnosed at a

pretty young age myself. (21) My birthday is Next month. Good luck,

welcome to the group. Keep us all updated.

Keli

> Hello, I'm Charlene and have just joined this group, I'm hoping to

> learn more about psoriactic arthritis. I have psoriasis on my

scalp

> and nails and on one toe and seems the arthritis is getting

worse.

> It was just in one finger but now its my whole hand it seems, also

> have it in my toe and wouldn't be surprised if its my whole foot.

I

> have a 6 month old baby and some tasks are now getting

> difficult....not to mention that my fingernails are hideous

> looking. This disease is horrible and I find it incredibly

> depressing, I don't know how I'll cope as it gets worse. I'm only

> 32 and already feel as if I'm 50. I am seeing a dermatologist but

> have more or less been told that there isn't anything to do other

> then apply some cream at night time which of course really does

> nothing. I live in B.C. (Canada) and perhaps we don't have the

same

> treatments as those of you in the U.S.

>

> I look forward to learning more.

>

> Charlene

[Guest guest]

judith wrote:

>

> Hi.... I am new to the group.......

==>Hi Judith! Welcome to our group.

>...i have been reading the posts.....and keeping notes..............as

i can see that i will have a lot of reading to do in the

Files..............thanks for all the wisdom and information.

==>Enjoy reading and learning. Education is certainly the key to

understanding what you need to give your body so it can heal and

maintain health throughout life! We are here to help you any way we

can!

The best in health, Bee

[Guest guest]

hI ALL!

i WAS DIAGNOSED OVER 4 YEARS AGO WITH FIBRO AFTERE I ALMOST DIED

LOSING 8 PINTS OF BLOOD IN 4 HOURS...SPENT 2 MONTHS IN THE HOSPITAL

WITH CROHNS AND FIBRO ON MORPHINE AND DEMEROL DRIP...DOES ANYONE ELSE

HAVE PROBLEMS WITH GENERIC MEDS NOT WORKING EFFECTIVLY? THE DR HAD ME

ON 20 MGS OFAMBIEN TO HELP SLEEP AT NIGHT, AND 4 MGS ON ATIVAN

(LORAZEPAM) TO HELP THRU THE DAY WITH SPASMS...BECCA(36 IN SARASOTA FL)

[Guest guest]

Welcome to the group, Cheryl. The main things we have found this

useful for are germ concerns and secondarily there appear to be some

minor serendipitous health stories, too. The more the germ plays a

role the greater the likelihood of some changes seen for the better!

Take a look at our files section under the disease research folder,

see menu at the left side of group webpage. Have fun and good luck.

bG

>

>

>

> Hi everyone,

>

> Someone on the silver list posted about your group. I am

intrigued and decided to join to learn about this. I've never heard

of this method of healing, but open to all methods. I'm disabled

with all sorts of health problems. I do make my own CS, take herbs

and use homeopathic remedies. I hope to learn from you!

> thanks cheryl

>

>

>

>