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 » I need advice re upcoming appt and more

 - UBBFriend: Email this page to someone!    
Author Topic: I need advice re upcoming appt and more
Michele
LymeNet Contributor
Member # 13669

Icon 1 posted      Profile for Michele     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am supposed to go see me llmd next Monday - 6 hour drive w/hotel, food and gas expense. I haven't been able to stay on a full round of any abc due to mutiple issues.

Since implementing supplements I'm feeling a little better but definitely not 100 percent.

To be totally honest taking all of the LEDs scare me (cdiff, kidney issues, yeast) but I'm sure I can't get btr w/out meds.

I think I have a really good llmd in mo. Should I be totally up front with him about my fears or will he think I'm crazy?

Should I cancel the appt due to not taking al of meds he scribed?

I've been fighting this for 2 years now - I know I should be better by now but can't get overthe fear of taking so much medication. I was ok with the doxy/nystatin but he says I need to try other things.

My husband is getting very aggregated with me for not sticking w/meds as he probably should be.

It's hard to remember to take them all every day and when I miss a dose I have a hard time going back on them.

Nort too mention the costs that have racked up! He gets aggrevatedwith that as well.

I've asked him to help me remember the meds but he tells me I'm an adult.

I'm scares to be upfront with llmd about al this. I don't want him to drop me.

I can't afford to go next Monday but don't want him to drop me as a pt for not coming or not beinng able to pay or not sticking to the regimen.

I feel so lost and noone cares much to hear about how I feel anymore.

I have to work and have two children who need me.

I know this is long and I tried to split it up. Thank you all for listening. I don't feel like I can be honest anywhere else.

Posts: 124 | From Indiana | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Michele
LymeNet Contributor
Member # 13669

Icon 1 posted      Profile for Michele     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sorry about all the typos. I'm on my cell phone at work.
Posts: 124 | From Indiana | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'd talk to the doc. I'm not sure exactly what the issues are with non-compliance on your Abx. It's unfortunately your spouse isn't supportive. if you refuse to comply, you can't get better either though.

Hey, a 6 hr drive is better than my 12+. [Frown]

Two years w/o progress is unacceptable in my eyes. Especially if you haven't had combination Abx therapy. I hear you about the spouse issue. I'm there with you. [Frown]

I suggest being quite aggressive with your doc and bringing up concerns. You deserve to have concerns addressed and I'm sure the doc will IF you do this. After two years, I'd hope the LLMD really is considering some major protocol changes or looking for non-Lyme possibilities! Best of luck.

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm sorry you are having a hard time. It is hard and many of us can sympathize.

You wrote:
To be totally honest taking all of the LEDs scare me (cdiff, kidney issues, yeast) but I'm sure I can't get btr w/out meds.

Taking prophylactics should help somewhat.

CDiff - Saccharomyces boulardi

Kidney & liver supportive supplements

yeast - good quality probiotics and nystatin - other supplements -


You wrote:
It's hard to remember to take them all every day and when I miss a dose I have a hard time going back on them.

Get some pill dividers - set up your pills for several days at a time. Click on the amazon box on the left side of this page. When you get to amazon - enter the words "pill divider". There are many different kinds.

Get a timer device and set it to go off when you need to take pills. There are some that are attached to pill boxes, some that you can wear, some that vibrate etc... My sister uses one and it helps a lot.

Yes, go to your appointment. Tell your doctor the issues. Many of us have the same issues. I'm sure he/she has heard it many times and probably has some idea of how to help you.

You wrote:
I feel so lost and noone cares much to hear about how I feel anymore.

We care! I know it feels like no one cares but I'm sure your family does in their own way. It's hard for others to understand if they've never gone through it. In any case, please know that you can always come here because we DO understand. Keep asking for suggestions. Lots of people here have ideas that may be useful to you.

Hang in there and keep trying. The alternative is not pleasant.

Terry

Posts: 6281 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Michele, you need to be totally honest with your doctor. That is the only way he can help you!

If you tell him your concerns he should be able to discuss these issues and help you come up with ways to prevent or resolve the problems.

And you could always set your cell phone to alert you when it is time to take your meds.

You could also use visual reminders, I use sticky notes all the time to remind me of things I need to do.

And whatever you do, don't give up.

Talk with your doctor, plan a treatment protocol that you feel like you can manage taking on a daily basis, make reminders, and follow through. It will take time but you will get used to your new routine after a while.

Good luck.

Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Aniek
Frequent Contributor (1K+ posts)
Member # 5374

Icon 1 posted      Profile for Aniek     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think we've all had times of non-compliance. The last year I've had a lot of difficulty keeping up with my supplements and it is because it just reminds me that I'm sick.

Just a thought, maybe it would help if you went to a psychologist who works with people with chronic diseases. It may help you overcome your fears and find ways to help you comply.

--------------------
"When there is pain, there are no words." - Toni Morrison

Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
WildCondor
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Take your meds, be honest with your doctor, and make sure the protocol he has you on is strong enough!! Definitely take s. boulardii (FLorastor) when on ANY antibiotic to prevent c.diff. Does your LLMD use the Cowden herbs? That sounds like its more what you are looking for.
IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
michele, [group hug] [kiss]

i'm so sorry for all you are going thru; and you have vented to the right people. good job on your paragraphs for folks like me to be able to read too [Smile] xoxox

please send me a PM with the full name and city/state of present llmd plus the NEW one they are sending you too ...

full name, city/state ... just want to check my llmd lists to make sure they ARE ON LIST.

terry had outstanding details for you. you could set a clock radio or alarm clock to take your meds since my microwave will only go to 99 minutes.

oven clock would work too. best wishes to you [Smile]

IP: Logged | Report this post to a Moderator
Michele
LymeNet Contributor
Member # 13669

Icon 1 posted      Profile for Michele     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for all the replies/suggestions.

I'm going to go to the appt and lay it out on he line and hope that he understands and will still help me.

I've never heard of Cowden herbs or Florastor. What are these and where can I get them. Or find more info about them?

Thanks again for being here everyone.

Posts: 124 | From Indiana | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Michele:

I've never heard of Cowden herbs or Florastor. What are these and where can I get them. Or find more info about them?

michele,

click on SEARCH above

type in Cowden
medical
subject line
any date
leave membership no. blank; click search

read all replies/posts; if NONE, use back button and show entire post vs. subject line; click search.

good luck :)_

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.