LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » ADVICE....Daughter off all meds now

 - UBBFriend: Email this page to someone!    
Author Topic: ADVICE....Daughter off all meds now
ICEiam
LymeNet Contributor
Member # 7519

Icon 5 posted      Profile for ICEiam     Send New Private Message       Edit/Delete Post   Reply With Quote 
HI,

My daughter had been on IM Rocephin, 800mg Ketek and Mepron. Had horrible head pressure

eye pressure and ear pain so Dr. H had an MRI done. He took her off the Rocephin and Mepron last week.

He called last night hadn't seen the MRI yet, but took her off the Ketek now for 4 days then wants her back on it but only 400mg until a week from Tuesday.

Any ideas as to why he did that? I am SOOOOO confused.

------------------
ICEY

IDAHO LYME SUPPORT GROUP
[email protected]


Posts: 468 | From Las Vegas NV | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
pippy
LymeNet Contributor
Member # 6005

Icon 1 posted      Profile for pippy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Icey,

Sorry you and your daughter are going thru this. Did doc tell you the reasoning behind doing this? Just a guess, but it may be to back her off the meds because perhaps a herx (dieoff) reaction is too much and is causing the severe symptoms and inflammation.

Think of it as riding a wave: you have to be
exactly on top of it or you'll get pounded by
it. its a lot of backing up and starting slowly again....there is a real balance that is attempted.

Someone here told me once that slow and steady
wins the race and that the meds should kill
the lyme etc without killing you. So sometimes
its good to back off and allow the body to recover.

You may want to have your doc explain things
better or tape record the phone visit so you
can remember everything that was said. It gets
overwhelming and its easy to forget important things later.

Hope this help....sorry I can't do more...
Hang in there!

-pip

[This message has been edited by pippy (edited 17 July 2005).]


Posts: 446 | From California | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
ICEiam
LymeNet Contributor
Member # 7519

Icon 12 posted      Profile for ICEiam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks Pippy, you are always so positive and helpful. I would remember more if I was the

one talking to Dr. H. but I try to let 24 year old daughter handle this on her own as

much as possible. He told me what he wanted me to do when I was giving her injections of recephin, he was VERY careful to tell me exactly what to do.

She says he told her she was really sick and she was a mess and then told her what he wanted her to do........LOL, she is a mess alright!!

He did tell her that he had lots of Ideas for her. She is to call him in 10 days.....he is taking a much needed vacation, I am sure!!

We fly into Reno on the 22 of Aug to see him again.

------------------
ICEY

IDAHO LYME SUPPORT GROUP
[email protected]


Posts: 468 | From Las Vegas NV | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
valymemom
Frequent Contributor (1K+ posts)
Member # 7076

Icon 1 posted      Profile for valymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
ICEiam,

A good friend who has a 22 year old daughter with lyme advised me or my husband to be in the room when seeing the llmd.

We let our 22 year old go three months himself to his appointments and that caused miscommunication. He played down his herxing/symptoms and forgot things to ask/tell.

My friend said to explain that it is best to have an advocate and someone to take notes.......

I think he understands this reasoning.


Posts: 1240 | From Centreville,VA | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
valymemom
Frequent Contributor (1K+ posts)
Member # 7076

Icon 1 posted      Profile for valymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
I know it must be frustrating for our young adults to be so dependent.

Hope things get better for you all when you see him.


Posts: 1240 | From Centreville,VA | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 10 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
He probably took her off the meds cause she wasn't doing well on them. He wants to get the MRI back to help see if it is the herx or to be sure it isn't anything else.

We see this fairly often.

If it helps....

I would have done the same.

But I am NOT a doctor... just been there in her shoes and have seen others who have.


Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
mtgebrkr
Member
Member # 7631

Icon 1 posted      Profile for mtgebrkr     Send New Private Message       Edit/Delete Post   Reply With Quote 
I recently relapsed from CNS lyme after 6 years. I had it under control, or so I thought. I was taking doxy since that seems ed to be the only drug that really hepled me until when I learned I had babesia as well and why I was not responding so well.
Unfortunaletly I did not take the high levels of doxy required to keep the bug under control and for a couple fyears, I would miss doses and just take 200mg etc. I never visited my doctor for Lyme.

I went back to my LLMD since I felt I had no choice. I was ok one month - then the next on deaths door.
My LLMD gave me Ketek, Sulphur, Mepron, and Plaquenol. I herxed so bad for 16 days that I wound up in the hospital emergency room thinking I was poisoned and had sepsis. I was further rushed to the emergency room 1 other time because I had stiffness in my neck and chest muscles, ribs, etc. and I felt like I couldnt breathe. The doctors said I was getting ari concentration.

We stated pulsing the meds including the Ketek, and herx started again, and I became suicidal. I pulsed again, and stated with just sulphur and then added Ketek ( no Mepron yet or plaquenil) and herxed again. My whole body started twiching, felt like I couldnt breathe again, ( I also have it in my throat box and ridge of my nose) not to mention my face as well.

Ketek is a VERY strong drug, and not everyone can tolerate it. You amy be able to tolerate it later as sprirchete level is lowered, but it may not be the best drug to start early in treatment with. I have had Lyme for 16 years and was high functioning for 6 years, but screwed myself up by not going to the doctro earlier- and not taking enough doxy to keep my disease under control.

People can yell at me- but my worse fear of relapsing happened, and it hit me like a tanker. I did not feel any of the symptoms that I came out when I herxed. I had some problems during the year, insomnia, waking up gagging sometimes, but thought it was normal stress related items.

I would not take Ketek for your daughter right now. I am currently trying biaxin with Mepron, and plaquenil. LLMD says that it will take longer to work, but I cant live on a Ketek herx because I thought it would kill me.


Posts: 38 | From New York | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
ICEiam
LymeNet Contributor
Member # 7519

Icon 12 posted      Profile for ICEiam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for the replys everyone, did I mention she has been on Ketek since March

when she was "offically" diagnosed? Then he added Mepron for the Babs and then the Rocephin shots.

Took her off the Mepron and Rocephin last week. Is starting her back on Ketek on Wed. but only 400mg.

Maybe the slow and steady? He told her in 10 days he had some other ideas for her. Such a nice man and VERY genuine. Mentioned a total body cleanse.

He hasn't gotten the MRI results yet.......seem this is a common issue for Lymies.

Feel so bad for all of you.

HUGS,

------------------
ICEY

IDAHO LYME SUPPORT GROUP
[email protected]


Posts: 468 | From Las Vegas NV | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
Lymester
LymeNet Contributor
Member # 5848

Icon 1 posted      Profile for Lymester     Send New Private Message       Edit/Delete Post   Reply With Quote 
I agree with Pippy, slow and steady is currently working for me. I have had some very good days and some very bad.

I know that I couldn't deal with those doses and work fulltime and take care of my family.

My activity level and energy level is slowly increasing bit-by-bit, every month since last Nov.

With a 20-something yr old child,I would want to sit in on the consultation, but would just listen. I would want to be aware of the treatment process and the llmd's theory/progress on my childs illness. (but, my daughter's not even 7 yet).

Sounds like she had a lot of meds to work with and the herxes are very disturbing and frightening. The doc is doing the right thing.

Hang in there


Posts: 519 | From CT | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200

Icon 1 posted      Profile for Michelle M   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Icey, the brain inflammation thing is hard to handle! Sounds like the Diamox did not do much for your daughter. It didn't work for me either. My doc took me off it after a week trial.

I'm glad your daughter's doc is taking a look at her MRI shortly and giving her a little break in meds till he knows what's what. The "exploding head" thing can be pretty hard to bear.

If she doesn't mind you coming along to ask questions/take notes, I'd be stowin' away on her next appointment fer sure!

Let us know how she does, please!

Michelle M


Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
arg82
Frequent Contributor (1K+ posts)
Member # 161

Icon 1 posted      Profile for arg82   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by valymemom:
A good friend who has a 22 year old daughter with lyme advised me or my husband to be in the room when seeing the llmd.

We let our 22 year old go three months himself to his appointments and that caused miscommunication. He played down his herxing/symptoms and forgot things to ask/tell.

My friend said to explain that it is best to have an advocate and someone to take notes.......


I definitely know how important this is. I have been to very few doctors appointments on my own and always feel more comfortable having someone else there to listen and absorb the information I can't grasp.

However, I can say that I much prefer whichever parent who is with me to not talk much during the appointment. I prefer for them to be more of a silent observer. They don't know nearly as much about Lyme as I do and they can't tell how I've really been feeling so I prefer for them to leave that up to me. My dad's great with that and I prefer having him take me to my appointments, my mom has a little harder time not bringing things up that I don't need to talk to the doctor about.

It is rough being a young adult, technically supposed to be independent and in charge of our own care, but still having to rely on parents for so much. But I guess it's just the way things are and I'm thankful I have parents who are understanding and supportive.

Peace and healing,
Annie

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

Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

Click here to see my Lyme journal.


Posts: 2184 | From Rochester, MA | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939

Icon 3 posted      Profile for Kara Tyson         Edit/Delete Post   Reply With Quote 
Sometimes going off of a medicine is the only way to tell the differance between Lyme, a herx, and an allergic reaction to medicine.

Trial and error sometimes.


Posts: 6022 | From Mobile, AL | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.