Re: Something new every day

[Guest guest]

Dear Trish,

I have been reading your posts and just want to let you know I also live in SE

PA. Three of us have been tested positive and one includes my son who symptoms

peaked around 12 years of age. I have been to several of the SE PA Lyme Assoc

meetings which are very informative. If you would like to email me for the Dr we

use please do.

Lynn

" globe_amaranth@... " <globe_amaranth@...> wrote:

Hi Everyone,

I am sorry to be so self-centered here, but I wanted to update you on my " case. "

Yesterday I learned an awful lot. First, I found out that the county I live in

(Chester County, PA) ranks THIRD in the United States for Lyme disease

incidence. So why my present doctors are treating it so casually is just beyond

me. I mean, why they ALL are so easy-come, easy-go about ticks just baffles me!

I will say, to my doctor's credit, that he bothered to ask whether or not we get

deer in our yard. I said yes, and he looked doubtful (eternal skeptics, doctors

are.) So he asked for further proof, like " Do you live near the woods? " and

when I said, " I sometimes look out my living room window and see a deer four

feet away " he boosted my son's antibiotic course from 14 to 28 days, because of

that information alone. That's to his credit.

Second, I no longer think I am a hypochondriac. I believe I do have Lyme. I was

talking to a lady from our local Lyme Foundation about it, and she and her son

have Lyme. I asked her whether or not she ever gets pain in her jaw? She said,

" Yes, in the jaw, the ears, along the sides of my neck, and into my shoulders. "

And I got goosebumps all over because that is me, exactly. I actually think I

might have had it for a year, because I've had unexplained cystitis, shoulder

cramps, knee problems, and other symptoms for that long. Which means I

breastfed my son while I probably had Lyme, and he may have had it before this

tick bite. So, in a weird way, maybe that tick bite was a blessing? It woke us

up.

Third, I got on Ann Corson's 11 month waiting list. She must be an extraordinary

woman. I felt like I was talking to general in the military when I reached her

receptionist, the process of exchanging information was so orderly and succinct-

and SHE set the rules. No talking unless you are asked something. I

appreciate that though. I am now trying to find a doctor who will take us before

my son's antibiotics ran out. The Lyme Foundation lady told me....and I am

reeling with disbelief here.....that I should go for 3 to 6 MONTHS of

antibiotics for my son. ( " Because you really want to make absolutely SURE he

doesn't have it lingering, trust me, " she said.) That spooks me. My doctor made

me think that people will die if they have much. So I just don't know. I am

still praying that a capable doctor will take us under his or her wing, test for

the co-infections without me having to prod and push, and give me a REST.

And that's that. Thank you, Colleen, for the useful information, I'm overwhelmed

with researching and it's nice to find suggestions in my mailbox without having

to dig through the internet for them:)

Best wishes, as always.

Trish

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[Guest guest]

What is CHOP?

[Guest guest]

Trish, I know you were already told this by sonther list member, but whatever

you do, do not take your son to CHOP for any Lyme related concerns.

Sue

[Guest guest]

What is CHOP?

CHildrens Hospital of Philadelphia- the #1 rated kid's hospital in the country

& right in Trish's backyard.

Apologies to the rest of you- I was sure Trish would know what CHOP is

Sue

[Guest guest]

I agree four weeks is not enough but to battle it back then it returns with

a vengence.

My LLMD decided it was time for a vacation for a month from antibiotics and

my kiddo lasted 3 weeks......I put her back on and now not only is the Lyme

back with a vengence the antibiotics are not touching her symptoms.

Wish us luck we go back on Thursday.

Jeanette

[Guest guest]

I am hoping to get some suggestions here about my son, who just turned 11. In

Aug.05 he was diganosed with ringworm (which i have read here is not the first

misdiagnosis). Then 3 mos later had symptoms including swelling of knee. My PCP

sent us to ortho who drew synovial fluid and he was diagnosed with late stage

lyme. He prescribed 4 weeks of doxycycline. The symptoms subsided. Now 4 mos

after treatment, he has had reoccurring colds, low grade fevers, and slight pain

in the kneesand ankles. Also I have noticed concentration and mood differences.

PCP says normal for an 11 year old boy, don't worry he's fine. Here is my

question, After treatment shouldn't there be follow up blood tests? and

especially now with those symptoms? I am at a loss, the doc seems to think I am

overreacting an says there is no need for testing or a refferal to a Lyme

specialist. Ay help would be greatly appreciate. thanks, Lori

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

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[Guest guest]

Lori, You need to get your son to a Lyme specialist

ASAP. Follow your gut, you know your son and the

symptoms he's experiencing are probably Lyme symptoms

and any doctor who tells you that you are overreacting

about your son's health is not the doctor you need for

your son. You need a doctor who understands Lyme and

the co-infections and knows how to treat Lyme

correctly. Four weeks of antibiotics is not enough

for late stage Lyme and any doctor who believes this

is not up to date on current and proper treatment for

Lyme.

--- Lori <lmart1129@...> wrote:

> I am hoping to get some suggestions here about my

> son, who just turned 11. In Aug.05 he was diganosed

> with ringworm (which i have read here is not the

> first misdiagnosis). Then 3 mos later had symptoms

> including swelling of knee. My PCP sent us to ortho

> who drew synovial fluid and he was diagnosed with

> late stage lyme. He prescribed 4 weeks of

> doxycycline. The symptoms subsided. Now 4 mos after

> treatment, he has had reoccurring colds, low grade

> fevers, and slight pain in the kneesand ankles. Also

> I have noticed concentration and mood differences.

> PCP says normal for an 11 year old boy, don't worry

> he's fine. Here is my question, After treatment

> shouldn't there be follow up blood tests? and

> especially now with those symptoms? I am at a loss,

> the doc seems to think I am overreacting an says

> there is no need for testing or a refferal to a Lyme

> specialist. Ay help would be greatly appreciate.

> thanks, Lori

>

> ---------------------------------

> Get amazing travel prices for air and hotel in one

> click on FareChase

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hello Marcia:

Beth's LLMD felt she needed a medication break because she had been on them

for so long. It was against my better judgement because we had doubled the

antibiotics mid treatment and then she got worse. She leveled out and things

were going well. Her grades were good, her sleep patterns good, everything

good. She was happy. She lasted 3 weeks without meds, then her grades

slipped and her mood was horrible.....snapping and short with everyone. So I

started her back on medication. About a week and a half into meds she starting

sleeping 12-16 hours at a time, missed 2 1/2 days of school this past week and

her stomach hurt. I called doctor and finally got an answer back and it was

come in to see me and no more meds until then. She is still sleeping it off

but we'll know more on Thursday. I just stopped antibiotics Friday so I

really dont know much more. She may have just be having a Herx on the meds but

anyway ....

Hopefully, Thursday's visit will give us more information.

Jeanette

[Guest guest]

Like so many on this list, I hate having my daughter on aggressive antibiotics,

but worry about taking her off as well...Dr. likes to keep them on until 2

months after all symptoms are resolved and there are no relapses. My daughter

has been on 2-3 abx at a time for 2 years now, and is on her 3rd course of IV

abx as well.

I have heard that when you stop abx all together it can take 3-4 weeks for a

relapse to occur. I believe that is the time it takes for the spirochetes to

build back up in your system and wage an attack.

I try to take solice in the downtimes believing that often they are a herx and

that the abx are doing their job killing off the spirochetes thus making her

temporarily worse. I try to see if the symptoms are similar to ones she has had

in the past but worse. This often is the case with a herx. If it is something

new or really severe, I call the doctor and often the meds are adjusted. She had

a bad reaction to IV Claforan and it was stopped. Dr. J thought at first it was

a really bad herx, but after allergy testing we learned she is actually allergic

to the Claforan.

My daughter has been ill for 12 years at least. Dr. J said antibiotics may be

needed for years, averaging 3-7 for long term infections...

I feel I just have to have Faith that we are finally on the right road.

Good Luck to all of you and to your children being treated.

PS (Meg's infection started with a case of " ringworm " too, at an early age...)

[Guest guest]

Thanks for your reply, I guess I needed reassurance to " follow my gut " and push

for a LLMD. We live on Cape Cod, Mass. which has an extremely high incidence of

Lyme. Yet, it is nearly impossible to find a specialist nearby. It doesn't make

sense. My other question is: after treatment do you usually have more blood

tests to check if the infection is still active? Thank you for your help, i am

truly thankful for all your experience,, and good luck to all of you who are

going through this. Lori

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

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[Guest guest]

>My other question is: after treatment do you usually have more blood tests to

check if the infection is still >active? Thank you for your help, i am truly

thankful for all your experience,, and good luck to all of you >who are going

through this. Lori

Dear Lori,

It is different depending on the doctor you see. But I think the LLMDs who treat

aggressively agree you can not rely on repeat blood tests, because they are not

as reliable as we need. And if the spirochetes have gone into a cystic form, or

are hiding out in the cells of the body, then they can still be alive and

active, but not show up in urine or blood tests. For this reason Dr. feels

it is more important to use tests as a guide, but to rely on the child's

symptoms to determine treatment course. He uses the rule of thumb that treatment

continues for 2 months after ALL symptoms are resolved, and if they crop up

after abx are stopped he would try another course.

He has treated over 6000 children and boasts success with many of them. I want

my daughter to be on the cured side of all this, as do we all.