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 do not understand this!

 - UBBFriend: Email this page to someone!    
Author Topic: I do not understand this!
samboy
Member
Member # 23932

Icon 1 posted      Profile for samboy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I went to ID specialist for treatment for Lyme, after abx ( 3 months oral and 1 month IV) my symptoms are back. My ID will not give any more abx even though my symptoms are back. I have pain in my spine, neck, body ache, swollen achy knees and no sleep. I feel like my some of my symptoms became worse after treatment and some got better. I have not got my old twitches, but I got some new ones and shifting joint aches. I do not understand what this means. Also, I have not been tested for any co-infections. I find this strange and unhelpful. Anybody had a similar experience?
Posts: 12 | From VA | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
julielynne4
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Yes - I think many here have had similar experiences. You will need to see an LLMD (Lyme Literate Medical Doctor) to be properly treated for Lyme.

ID specialists, neurologists, primary care physicians will only treat you a set amount of time according to what is the "standard" of the CDC.

Unfortunately, this is most often not near long enough. It is not too strange to me that you weren't tested for coinfections since many doctors don't; they either haven't heard of them or they don't think it's necessary.

I would post in the "Seeking a Doctor" section and someone will be able to tell you who the LLMDs are in your area.Best wishes Julie

IP: Logged | Report this post to a Moderator
Geneal
Frequent Contributor (5K+ posts)
Member # 10375

Icon 1 posted      Profile for Geneal     Send New Private Message       Edit/Delete Post   Reply With Quote 
I also recommend a LLMD.

One month, even six months of treatment for Lyme is not enough.

Also one must consider co-infections such as babesia and bartonella.

Most of us here have them.

Get yourself to a Lyme specialist.

Please.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
carly
LymeNet Contributor
Member # 14810

Icon 1 posted      Profile for carly     Send New Private Message       Edit/Delete Post   Reply With Quote 
Seeing an llmd for lyme treatment is just like seeing an oncologist to treat cancer. Only, by the time you realize it, you're screwed.

This whole thing makes absolutely no sense. The situation you find yourelf in is very strange and your ID doc. very unhelpful.

Just like most of us. (sorry so cheerful, I'm having a bad day.)

Posts: 797 | From New York | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
samboy
Member
Member # 23932

Icon 1 posted      Profile for samboy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all. I will look into finding an LLMD. I knew too little up until now. I find out that after 4 months of antibiotics, this is not something that can be treated easily. Also, when I was on IV I got flu-like symptoms. Now I have regular shortness of breath almost after every meal or the slightest stress. I am glad I found this website where I feel like I can actually talk to people that can relate to what I feel.
Posts: 12 | From VA | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
IMHisda
LymeNet Contributor
Member # 6998

Icon 1 posted      Profile for IMHisda     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had this happen to me too samboy. A LLMD who will treat you until your symptoms are gone is your best bet.

--------------------
RV

Posts: 249 | From Healing in USA | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
lymetime
Member
Member # 21054

Icon 1 posted      Profile for lymetime     Send New Private Message       Edit/Delete Post   Reply With Quote 
you need to be detoxing also, I got really sick on abx, took a week off and focused on detox, it made a huge difference...

good luck.

Posts: 48 | From california | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by IMHisda:
A LLMD who will treat you until your symptoms are gone is your best bet. [/QB]

Absolutely!

Welcome, samboy!.... please post over in Seeking a Doctor and someone will help you find a dr!!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95207 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395

Icon 1 posted      Profile for lymewreck36     Send New Private Message       Edit/Delete Post   Reply With Quote 
Welcome to our group Samboy, though I am sorry you have to find yourself here.

All of us here began on the same road you are on. In the beginning you ask why, you are confused.

Then you find a llmd and start to read about lyme and its nasty politics.

Following the confusion, you become a warrior.

Welcome to our troops. WE are here to care for you and help you.

Best of luck and be glad to help in any way possible.

Mary

Posts: 1010 | From North Carolina | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
WildCondor
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
You dont understand it because you went to an ID doctor. They don't know how to treat Lyme. If you want a doctor who is compassionate and knows what to do, see a LLMD.
IP: Logged | Report this post to a Moderator
Sick Tick
LymeNet Contributor
Member # 23003

Icon 1 posted      Profile for Sick Tick     Send New Private Message       Edit/Delete Post   Reply With Quote 
So sad each and every time someone new to Lyme diagnosis posts this same thing. Going to an MD and being told that you will only need short treatment and you will be all better, only you are not. And worse yet, your MD abandons you, or tells you you must have something else wrong. I am so TIRED of hearing this happening to folks! Brings back very bad memories of feeling all alone with no one in the medical community to call when symptoms get scary.

Welcome....and know that this is how many of us started out.

Posts: 283 | From where the ticks are! | Registered: Oct 2009  |  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.