Re: [Lyme-aid] nine weeks of Rocephin

[Guest guest]

Connie,

I am so excited for you. You sound great. I hope this lasts forever.

I am completing my third week if iv rocephin and just heard my WBC is

slightly lower than normal. My doc is not worried but my iv nurse suggested

we get counts every week to be sure it doesn't drop much lower. The doc

approved an additional 2 weeks (after the first 4) so I hope insurance does

too.

So glad you're doing well.

Irene

[Guest guest]

Dear Irene:

I'm so happy that you are doing well. Before I forget, as far as a low WBC,

have you been checked for Ehrlichiosis? In 1996, mine went down to 400 and

retrospectively can now be attributed to the undiagnosed Ehrlichia.

Herxheiming, I have been told can exacerbate this common Ehrlichia symptom.

You're so brave to have started the Rocephin, I \ve been putting it off. My

" legitimate " reason is that I am treating the Babesiosis first. I've had

Rocephin at two different times, (1) for the LUAT and (2) an IV trial to see

how I would do. Both times, by day 5, I found myself in a state of

despondency, unlike I've never experienced. I've been told that this means

brain involvement. My worst symptom has never been cognitive difficulties,

yet if one dose will do THAT, what could consecutive days do? Scary... It

has been recommended that I start after my menstrual cycle and to use opiate

derivatives (Percocet being the best), not for pain relief but rather for the

Tumor Necrosis Factor (TNF). Supposedly it really helps with the

emotional/depression part of Herxheimers/treatment. I do not know how to

explain TNF, it has something to do with calming/bonding the toxicity.

My better half has been on Rocephin for about 7 weeks, was he ever

interesting to watch? Additionally, I have the moral/ethical decision to

make about giving my 15-year-old Rocephin or not. She started Biaxin/Flagyl

on 4/4 and has been digestively tolerating quite well. Though, the day after

her birthday, she did not listen to her new stereo she had been dying for.

She slept solidly for 3 days -- that is REAL sick for any teenager!!! Thank

God, I am 100% certain that this is what she needs. As a Mom it is tough to

watch, yet I am fortunate that she fully understands the " process. "

Take care,

Annie

[Guest guest]

In a message dated 4/23/00 11:20:20 PM Eastern Daylight Time,

InformationJunki@... writes:

<< Additionally, I have the moral/ethical decision to

make about giving my 15-year-old Rocephin or not. She started Biaxin/Flagyl

on 4/4 and has been digestively tolerating quite well. >>

not sure I understand your post...I myself am having the big questions

whether my 17 year old should go on Flagyl due to it's severe side effects

potentially....but it is a no brainer as far as Rocephin goes...is it because

it is IV??? <trying to understand> Bernadette

[Guest guest]

Dear Bernadette:

I thought, " Oh, what a bizarre world and all the wonderful decisions we get

to make. "

I didn't think twice about using the Flagyl. I knew up front that compliance

is tough because of the horrific taste and aftertaste. Cutting the pill into

quarters and getting a solid coating of peanut butter makes it more

tolerable. Now we just laugh at the contorted faces she makes. I need to

look into this matter further, but I believe that there are More than one

type of Flagyl. The preferred one that goes deeper into the cell (Can you

tell I have a business background and not medical, LOL). I thought it was

named something klike Flagyl -T, I hear people get it specially compounded.

I figure as long as she is doing Flagyl, we might as well go for a homerun!

COULD SOMEONE PLEASE EXPAND ON THIS.

Correct, my primary reservation with Rocephin is that it is an IV. I am

actually experienced at doing IVs, I'm concerned about the psychological

implications on a little girl. I've had a lot of practice in my CFIDS days

of the infamous Vitamin C drips and IgG. Currently, I'm giving my sweetheart

a daily Rocephin. I'm concerned about how pathological this all seems. If

you walked into my home, I have boxes of supplies everywhere, my refrigerator

has less and less space for food, I.V. pole in the way all the time -- it is

so surreal as it is. I suppose that I should be grateful to finally know

what we have, appreciate access to medication and find more ways to add humor

to this nightmare. I'm worried how my daughter's innocent brain will process

the craziness of this surreal nightmare. Thank goodness that she essentially

" Gets it. " After hearing about the incredible results children get from

Rocephin at the conference, I think holding off until school ends.

[Guest guest]

Dear Bernadette:

Oops, I sent before I signed off and Spell Checked. Oh, well...

My understanding about Flagyl is that it cannot be used longer than 4 months

consecutively. Also, blood work has to be done to check on toxicity levels.

Is there anything else I am missing? With Rocephin the main concern is

Gallbladder stones and sludge, right? Someone please respond, thanks.

You should be my daughter's Mom and I should be your child's Mom and we

wouldn't even have to be posting on this issue. If only life could be so

simple!

Take care,

Annie

[Guest guest]

In a message dated 4/24/00 11:09:16 AM Eastern Daylight Time,

InformationJunki@... writes:

<< You should be my daughter's Mom and I should be your child's Mom and we

wouldn't even have to be posting on this issue. If only life could be so

simple!

Take care,

Annie >>

Annie Life is not simple..I have THREE kids positive for lyme... gotta

laugh or I would cry...b

[Guest guest]

In a message dated 4/24/00 11:09:16 AM Eastern Daylight Time,

InformationJunki@... writes:

<< My understanding about Flagyl is that it cannot be used longer than 4

months

consecutively. Also, blood work has to be done to check on toxicity levels.

Is there anything else I am missing? >>

cancer risks increase....Flagyl is used for 6 months...b

[Guest guest]

In a message dated 4/24/00 10:07:17 AM Central Daylight Time,

InformationJunki@... writes:

<< With Rocephin the main concern is

Gallbladder stones and sludge, right? Someone please respond, thanks. >>Yep

I had six weeks and had gallbladder sludging and EXTREME pain...emergency

room pain.

[Guest guest]

Hi Connie,

Sorry for my delay to responding to your fantastic news, I have been

feeling pretty lousy last few days and in bed a lot. If anything could have

cheered me though, it was this post about how well the Rocephin is doing for

you and the fact that your doctor will continue to keep you on it for a few

months to clean up whatever is left of those rotten spirochetes. I am so

happy for you and glad you feel well enough to return to work. I see my

doctor on the 28th and you can bet he will be getting an ear job from me

about my lack of IV. Last infusion I had was March 18, and he neglected to

send in timely medical information so my insurance denied me. Now how do I

appeal that??? He is having lots of personal problems and I will forgive

him some what, but hey, we are talking about my brain and my good health

here. It would be wonderful to even just have a few months of feeling good,

I am so tired of being tired....LOL!

Again, my best wishes to you for continued good health.

Big hugs,

Marta

From: ConnieK <conniek@...>

>Hi Everyone,

>

>I'm in my ninth week of IV Rocephin.................and believe it or

>not.............I am symptom free.......yes you heard me SYMPTOM

>FREE......it feels wonderful to be myself again. ....I am getting back on

>track with my sleep cycle, but I think that has been out of wack for so

>long, my body doesn't know what normal sleep is.....I have been taking an

>over the counter medication that has " Doxylamine Succinate " in it. I take

>two before bedtime and don't wake until 7:00am......How wonderful....to

wake

>refreshed.......... I hope this lasts.......forever.

>

>My LLMD wants me to continue the IV until I am symptom free for two more

>cycles of the spirochete. So that means until the middle of

June.........I

>have one more week of recuperation and then back to work, May

>1st

[Guest guest]

Connie:

What fabulous news! I've been feeling pretty damn good myself as you might

have read. Every healthy day feels like a gift.

Yes,.......forever.

Hugs,

beth (SF)