LymeNet Flash: VERY CONFUSED

This is topic VERY CONFUSED in forum Medical Questions at LymeNet Flash.

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Posted by Lucy's Daughter (Member # 10429) on :

I posted this before but someone suggessted that

I retype it with double spacing - I never thought

of that being a problem - thnaks for the help.

This is my first time on this site.

I have been sick since April 2002 when I rolled

over in bed and the whole room "went with me"

(extreme vertigo) and then my eyes

started "acting up" somewhat. Then I began with

severe stomach problems which ended up with me

having my gallbladder removed in 2003 - by then I

had quit work. I was having severe head pressure,

vision problems and major balance problems. Then

in 2004 I began with tingling in my right thigh

and feet and burning sensations all over and now

I twitch almost everywhere and the head pressure

continues to be severe as well as the balance

issues and the vision is terrible - floaters,

flashes of light, vision dimming, pain behind my

eyes. The balance gets so bad at times I feel as

if I cannot stand up.

I was recently tested for Lymes Disease (for the

fourth time). This time the test was done through

IgeneX and it showed three bands which were not

positive or negative, but interminate???

The doctor wants to begin treatment of Zithromax

(pill form) and Mepron (liquid form) for possible

babsia which can go along with Lymes Disease

which I don't even know if I have or not?? I am

VERY CONFUSED.

I have had numerous MRIs done along with an MRA

and an EMG and nerve conduction test and visual

evoked response and lots of blood work over the

years.

I am seeing an infectious disease doctor who does

extensive work with Lymes patients. I have only

seen him twice so far, but I don't know what to

think oir what to do. Some days the symptoms are

so bad, I just want to "give up", but that's NOT

an option.

Any advice would be greatly appreciated.

[ 22. October 2006, 12:33 PM: Message edited by: Lucy's Daughter ]

Posted by Lymetoo (Member # 743) on :

I'm sorry you have been so sick! Could you post WHICH bands were IND [indeterminate]??

It's very rare for an ID dr to treat Lyme disease long term, so I do hope you have a good dr there!

The fact that he knows about babesia is a good sign!

ARe you able to do some reading? It's always in the patient's best interest to be armed with knowledge!

Here is a good link that should help:

Wild Condor's Links and information:
http://www.wildcondor.com/lymelinks.html

Posted by moni (Member # 10373) on :

I have your exact symptoms. At the moment...i have dizziness, equalibrium problems, tingling/numbness, vision problems, and the weirdest...head PRESSURE. I try to explain to my doc its not a head ache feeling..its pressure on the top of my head which feels annoying and disturbing. I also had gallbladder removal. I hear that alot and wondering if missing that organ might contribute in some way.
Anyhow...i have MANY other symptoms but those are some big ones im experiencing daily!
If you ever want to chat pls feel [email protected]
I have been "diagnosed" with CFS they say thats why im this way...i think it something else and am in process of doing lyme test myself.
Hope we someday figure this out....i know first hand it sucks to deal with this all the time!

Posted by surg (Member # 6937) on :

The mepron and zithromax sound like a good idea. Your symptoms could be a co-infection with the lyme.

If the mepron and zith cause a reaction and kill off the babesia you will know pretty soon. I had intense symptoms of babesia dye-off with the mepron and zith
within 4 days. More GI symptoms, dizzyness, wavy vision, floaters, anxiety, and fever.

I took the mepron and zith for 6 months and it helped alot. It was a big turning point after 3 years of being really sick. My lyme test and babesia test were barely positive.

Posted by lymie tony z (Member # 5130) on :

LUCY...You got some splain'in to do!

What, are you confused about?

Sounds like your on a good regimen.

By the way it's not lymes disease...just lyme...no S cus it don't belong to or is named after anyone named lyme.

I ain't NEVER heard of ANY IDIOT in florida that treats lyme...

Hmmmmm and things that make ya want to go Hmmmmmm

I would REALLY like to know who you are referring to...kindly pm me so I can update my llmd's in florida list.

zman

Posted by bettyg (Member # 6147) on :

Welcome Lucy! So sorry to read about all your symptoms and the lack of proper treatment for it.

Have you had your thyroid tested?

I'm hypo/low active; hubby is hyper/over active and he has Betty Davis' bulging eyes, called Graves disease. That pushes on eyeballs, and might be a possibility for the pain behind the eyes.

As Lymetoo said, please show the nos. of the INTERMEDIATE on your Igenex western blot igm/igg.

You'll get answers here and much reading to do to educate yourself to meet with all MDs you encounter on your lyme journey. Bettyg [Big Grin]