Has anyone ever given you a prognosis?

[Guest guest]

How long did it take from the time you 1st saw symptoms until your

child was diagnosed?

Everyone who knows us keeps saying " Well, at least now you know what it

is. Now she can be cured "

But is this really curable? No one I've been in touch with ever

says " My child is fine now "

When I asked my dr. for a prognosis, he said: " Don't expect to see an

improvement for at least 2 months " . My optimistic husband interprets

this as meaning she'll be better in 2 months. I don't.

Can anyone share info about what kind of improvements or setbacks have

occured since diagnosis & start of treatment?

I'd be most grateful!

[Guest guest]

Dr. J in CT has told us that after 7 to 9 years on antibiotics he has seen

complete remission in some of his patients. Our family had Lyme for over a

decade before we were diagnosed so we already had brain damage from it. It

depends on so many things. My sons are respectively DR-2 and DR-4 positive

which increase the symptoms.

Kelley

[ ] Has anyone ever given you a prognosis?

> How long did it take from the time you 1st saw symptoms until your

> child was diagnosed?

[Guest guest]

So sorry!!

What is DR-2 & DR-4?

Kelley Putman <kputman@...> wrote:

Dr. J in CT has told us that after 7 to 9 years on antibiotics he has seen

complete remission in some of his patients. Our family had Lyme for over a

decade before we were diagnosed so we already had brain damage from it. It

depends on so many things. My sons are respectively DR-2 and DR-4 positive

which increase the symptoms.

Kelley

[ ] Has anyone ever given you a prognosis?

> How long did it take from the time you 1st saw symptoms until your

> child was diagnosed?

For up to date information about Lyme disease and the known co-infections

delivered to your email address see:

Robynns_Lyme_List/

[Guest guest]

It really does depend a lot on how long it takes to get diagnosed, and how

quickly the disease has disseminated throughout the body and attacked various

systems. I had asked Dr. J about length of antibiotics at one point and he

indicated to me that the least amount of time he had patients on antibiotics was

3 months (for patients I assume that caught it very early, and had no symptoms

after one month of antibiotics), and the longest so far was 7 years for a

10-year old that was misdiagnosed for 5 years and was paralyzed from the chest

down by the time he came to Dr. . Dr. said after 7 years on

antibiotics this child had no more symptoms and has been off antibiotics and

apparently cured and is now at the Naval Academy -- I thought it was an amazing

story.

My 7-year old son was diagnosed after 3 months which seems quick after hearing

all the stories on here, and I'm very grateful that he was diagnosed when he was

(only because we found out about Dr. J because all the other doctors we were

seeing were also making us feel like we were crazy). But the infection

disseminated throughout his body within a couple of weeks of infection and

seemed to be in his central nervous system almost immediately. So by 3 months

infected he was already displaying multiple scary symptoms. He's been on

antibiotics for a year now and still has some good days and some bad days -- but

thankfully not many very, very bad days anymore. Dr. J from the beginning

estimated that it would probably take 1 - 2 years of antibiotics for my son but

that he would gauge it based on when all symptoms went away... and then he would

give 2 more months of antibiotics as a safety net.

Marcia, I hope this helps. I also just read a book called 'Coping With Lyme

Disease' by Lang which I found very helpful and informative, you may be

interested in it. There is also a conference in Reston, VA for patients (and

parents) of Lyme Disease on April 1-2. If you are interested in it you can go

to www.hopetoheallyme.com for more information.

Patty in MD

[Guest guest]

These refer to tissue typing, the kind of tests given to organ donors.

People with positive DR-2 have a similar tissue type to the cell membranes

of the Lyme bacteria and thus are prone to autoimmune induced inflammatory

arthritis from Lyme. When the body attacks the Lyme bacteria the same

antibodies also attack their own tissues. There is a similar mechanism with

DR-4. This is why some people developed long term arthritis from the Lyme

vaccine which used a protein from the Lyme cell membrane, same as band 34 on

the Western Blot.

Kelley

[ ] Has anyone ever given you a prognosis?

>

>

> > How long did it take from the time you 1st saw symptoms until your

> > child was diagnosed?

>

>

>

> For up to date information about Lyme disease and the known co-infections

> delivered to your email address see:

> Robynns_Lyme_List/

>

>

>

>

>

[Guest guest]

It was about 3 years for us from symptoms to diagnosis. In the beginning, I saw

vague symptoms & her not feeling well a lot. Even thought Lyme because of where

we live (in the woods with a neighborhood full of folks who have had Lyme). We

got as far as a positive ELISA about a year into it. Two hospitalizations,

about 20 doctors including from 3 well respected childrens hospitals, having

been dumped by primary care docs & insurance company & written off as crazy

parents with a crazy kid, the ++ Western blot & diagnosis. Yes it was somewhat

of a relief. But the lyme has triggered another neurologic illness &

improvement 5 months into treatment is minimal. Our doctors are vague about

prognosis & how much damage is permanent, but they are optimistic about

continued improvement.

Sue

[Guest guest]

My son was diagnosed in in Sept. 2002, at the age of 11. Local Dr's

treated him with antibiotics for 3 weeks, and said that was enough. He

was still showing symptoms. I took him to a LLMD, who just rubbed me

the wrong way. My gut said 'keep searching'. We went to Childrens

Hospital in Pittsburgh, PA, where an infectious disease specialist said

his lyme was cured. He was still showing symptoms. We travelled to CT

in Jan 03 to see Dr. J. He put on 2 different antibiotics and said

it would take about a year. In April of '04, Dr. J told us that

was in remission. He has NOT had any Lyme symptoms since!

There is hope, it's just a long, long, road.

JoAnne

>

>

>

[Guest guest]

Thank you so much for sharing that -- it really is great for those of us still

battling this illness to hear about those who have made it through. I'm so

happy for you and your son that you kept searching, found Dr. J, and got him the

help he needed.

Patty in MD

Re: [ ] Has anyone ever given you a prognosis?

My son was diagnosed in in Sept. 2002, at the age of 11. Local Dr's

treated him with antibiotics for 3 weeks, and said that was enough. He

was still showing symptoms. I took him to a LLMD, who just rubbed me

the wrong way. My gut said 'keep searching'. We went to Childrens

Hospital in Pittsburgh, PA, where an infectious disease specialist said

his lyme was cured. He was still showing symptoms. We travelled to CT

in Jan 03 to see Dr. J. He put on 2 different antibiotics and said

it would take about a year. In April of '04, Dr. J told us that

was in remission. He has NOT had any Lyme symptoms since!

There is hope, it's just a long, long, road.

JoAnne

>

>

>

[Guest guest]

If only there was a " clear picture " in prognosis and treatment of

Lyme! I think that the kids who live in an endemic area AND have an

astute PCP/pediatrician...get treated initially and get better,

therefore, we don't " hear " about them. Unfortunately, often treatment

is delayed and the disease isn't diagnosed soon enough. Doctors

want " solid, test results " and insurances require it. There is no

such test for Lyme. It is based on a clinical diagnosis...which

wouldn't be a problem except that it has such a wide range of

manifestations from patient to patient, plus, many doctors are truly

illiterate when it comes to this disease.

Dr. J said that Jake would be on antibiotics from anywhere to a

year...on up to 5+ years. He will only stop treatment when he has

been 2 months, symptom-free. Oh, and how I pray for that day! We've

continue to deal with knee, ankle, & back pain with ATC ibuprofen &

some hydrocodone at night (some I had left over from last

year...about to run out...pray the NP we see on Monday will give us

something to take the edge off!). Today the chest pain has oddly

resurfaced causing him to lay down a couple of times.

Oh, how I hate this disease!

(TN)

[Guest guest]

(((((JoAnne)))))

Thanks so much for sharing this! We all need hope. Also, thanks for

still hanging around. We need to hear more from people with good

outcomes!

(TN)

In April of '04, Dr. J told us that

> was in remission. He has NOT had any Lyme symptoms since!

> There is hope, it's just a long, long, road.

>

> JoAnne

[Guest guest]

For our family, prognosis has been an ever changing and as yet unreachable goal.

Im thinking it's due to the fact that I had gone so long first undiagnosed

(misdiagnosed as post partum depression), then undertreated (the practice of 16

yrs ago). For Evan, I think the probable in utero transmission and the many

years of mild and dismissed sx ( or wrongly attributed to whatever was " going

around " that kids often get), made far reaching damage more difficult to

eradicate.

Plus for those of us infected and dx years ago, things were so different

then...the typical 3-4 weeks Amoxil ( or Doxy) probably did more to push the

spirochetes deeper or make them dormant rather than effect a real " cure " ....so

now years later we are suffering from ongoing 'hidden' damage.

Lately the problem seems to be finding drugs that he and I can both tolerate AND

get some effect from.

We also hear the seemingly magical " 2 months " ...EVERY time we get a new Rx--yet

that is an average guess of how long before the Dr can truly see IF something

works or time to try yet another drug. Plus there are NO tests to see if the

drug is making things worse vs a herx, until you wait it out. If the sx start

abating, the theory is that it was a herx and the bacterial load is lessening;

if sx stay or keep worsening, perhaps it's the wrong drug.

With all of the new info re: tissue types; it's become clear that we all have

such varied responses to the infection, to the drugs tried, and to healing that

it's hard if not impossible for a set protocol, like with strep throat (oh how I

long to hear that dx again!!!...A definite test, definite drug choices and a

definite 7-10 day resolution---usually)

Its so hard for all of us, especially given the long road to a dx...only to hear

that " fixing it " may not be so easy- in spite of the advancements in medical

technology....

I DO appreciate the hopeful messages, that even if it takes longer, improvements

can happen. Its harder though for those of us with pre-teens/teens...for them

time for the social growth and fun is running out...

Reminds me of a dear friend who lost her 7 year old to a rare kidney cancer a

few years ago. She would call me from yet another hospital stay, more concerned

about the teens on the ward...how much they were missing, how much harder for

them...after all the " high school years " last but 4 years...sigh

Back then, Evan had easily gotten over a series of " normal " infections (throat,

URI etc) and even over a positive Mycoplasma with a few months abx; even went

overseas on a student trip over 21 days...Little did I expect such a lengthy and

severe setback since then!!!

I know for many of " us " , it has become routine, but for those who may not be

doing so : if I may suggest a diary or log of daily sx, rated ( like 1-7 or

1-10) plus anything important such as how active or not the patient was;

anything that particularly 'set off' sx; etc...this way it is easier ( and more

subjective) to review with the Drs how well a treatment is going. Its also handy

to note cycles and work around them...Plus its less discouraging if you can look

back 3 and 6 months and see that perhaps the headaches ARE lessening ( despite

the daily pleas for another Tylenol), or that anything is (hopefully not)

worsening.

Also keep track of all meds, OTC drugs etc...its so hard to go for a follow up

and remember exactly what was given for that 3 AM headache 2 weeks ago!!! and if

it even helped/how much!

I thank ALL of you for your support, wisdom, sharing; it has certainly made it a

bit easier to hope, hang in and await remission!!!

Finette

WARNING: several health websites (and last night the evening news) recently

mention what we all have suspected: Even more than adults, children have very

variable abilities to process drugs...not many (less than 15%) are even tested

widely enough in kids...and the enzymes needed to safely handle the drugs

develop at a very variable rate ( not to mention that having a chronic illness

will tax the system even more). In a group of 10 . 4-7 year olds, it was noted

that EVERY one had a different level of several of the enzymes, and liver

function that is necessary to properly handle the breakdown/byproducts. AND

using a group of same aged kids, the variations were as bad...meaning that you

can't lump kids into age groups when assuming drug safety!!!

So we all have to be vigilant in noting ANY/ALL reactions to meds and not

dismiss them as " just " Lyme again.

Re: [ ] Has anyone ever given you a prognosis?

If only there was a " clear picture " in prognosis and treatment of

Lyme! I think that the kids who live in an endemic area AND have an

astute PCP/pediatrician...get treated initially and get better,

therefore, we don't " hear " about them. Unfortunately, often treatment

is delayed and the disease isn't diagnosed soon enough. Doctors

want " solid, test results " and insurances require it. There is no

such test for Lyme. It is based on a clinical diagnosis...which

wouldn't be a problem except that it has such a wide range of

manifestations from patient to patient, plus, many doctors are truly

illiterate when it comes to this disease.

Dr. J said that Jake would be on antibiotics from anywhere to a

year...on up to 5+ years. He will only stop treatment when he has

been 2 months, symptom-free. Oh, and how I pray for that day! We've

continue to deal with knee, ankle, & back pain with ATC ibuprofen &

some hydrocodone at night (some I had left over from last

year...about to run out...pray the NP we see on Monday will give us

something to take the edge off!). Today the chest pain has oddly

resurfaced causing him to lay down a couple of times.

Oh, how I hate this disease!

(TN)

For up to date information about Lyme disease and the known co-infections

delivered to your email address see:

Robynns_Lyme_List/

[Guest guest]

Good luck!

Did Dr. J. give you an estimate at your 1st appointment or later?

We only had 1 appt. When I asked, he said don't expect things to improve

before April. But I'd like to get a better idea.

By the way, did you know that Tamar & exchanged e-mails?

She said he sounds very nice!

provbs226 <susanhager@...> wrote:

If only there was a " clear picture " in prognosis and treatment of

Lyme! I think that the kids who live in an endemic area AND have an

astute PCP/pediatrician...get treated initially and get better,

therefore, we don't " hear " about them. Unfortunately, often treatment

is delayed and the disease isn't diagnosed soon enough. Doctors

want " solid, test results " and insurances require it. There is no

such test for Lyme. It is based on a clinical diagnosis...which

wouldn't be a problem except that it has such a wide range of

manifestations from patient to patient, plus, many doctors are truly

illiterate when it comes to this disease.

Dr. J said that Jake would be on antibiotics from anywhere to a

year...on up to 5+ years. He will only stop treatment when he has

been 2 months, symptom-free. Oh, and how I pray for that day! We've

continue to deal with knee, ankle, & back pain with ATC ibuprofen &

some hydrocodone at night (some I had left over from last

year...about to run out...pray the NP we see on Monday will give us

something to take the edge off!). Today the chest pain has oddly

resurfaced causing him to lay down a couple of times.

Oh, how I hate this disease!

(TN)

For up to date information about Lyme disease and the known co-infections

delivered to your email address see:

Robynns_Lyme_List/

[Guest guest]

My daughter has been ill most of her life. She is almost 16 and likely was

infected around age 2-3. She has been severely ill, only able to attend an hour

of school if that, and done tutoring for the rest. She was only dxed with Lyme

by Dr. 22 months ago. He initially told us with someone like our daughter,

that he sees results in 3-7 years (generally). He said he treats for 2 months

after all the symptoms resolve. Whenever she has tried the IV he has said he

suspects her to be on it for a min. of 6 mo. to a year.

We told him last month that another doctor she was seeing for a slight

scoliosis, had said she was ok and released her from her care. We said we can't

wait until Dr. J says " You are cured " He told us he had said just that to 3 kids

that week!! I did not ask if these were kids that had been ill for long or not,

but he was so reassuring that he may be able to say that one day to my daughter

it just gave us HOPE! He has said repeatedly that kids ARE cured, or improve

substantially with ongoing treatment. He has not given us any statistics, but is

always talking about those that are doing better!

We are holding out hope. It is hard being that she has been ill for most of her

life, but we are hopeful.

Hugs,