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?
Posted by julielynne4 (Member # 20336) on :
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
Posted by Geneal (Member # 10375) on :
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
Posted by carly (Member # 14810) on :
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.)
Posted by samboy (Member # 23932) on :
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.
Posted by IMHisda (Member # 6998) on :
I had this happen to me too samboy. A LLMD who will treat you until your symptoms are gone is your best bet.
Posted by lymetime (Member # 21054) on :
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.
Posted by Lymetoo (Member # 743) on :
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!!
Posted by lymewreck36 (Member # 4395) on :
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
Posted by WildCondor (Member # 434) on :
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.
Posted by Sick Tick (Member # 23003) on :
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.