Anyone else feeling this way?

hi Carrie- I figured I'd answer on here as to what my symptoms etc have been.

I was bit in April but no real treatment til July.
Started on doxy 400 for a month then he added biaxon for a month.
I wasn't herxing alot and wasnt too bad really. I handled both meds well but dont really think they hit the lyme yet.

I too have mostly neuro lyme. I have numeous lesions "suggestive of demylination disease". I was only at the first llmd twice and he says the lesions are classic lyme and hopefully could be stopped.

I then went to another llmd who I originally tried to get into but he was backed up. He immediately spotted babesia and switched my meds to azithromycin, malarone and artemesinin.
I herxed like crazy because it was definitely working.

This dr will not yet rule out MS.  Not sure why tho.

I had/have all the symptoms you have and it is scary for sure.  I am still learning when to worry and when not to. 

My neuro sx are awful.  Yes, the vertogo, dizziness, swelling in my brain, headaches, eyeballs hurt, stingining face, numb legs etc.  on and on and on.  I think the worst was when my one side went completely numb.  That might have been something to worry about.  My eyeball was numb and I had to manually blink it.  Terrible feeling but it all goes away and doesnt last too awfully long.

It sounds like you are having all the same neuro symptoms that many of us have as well.  I was concerned about my brain getting properly treated while treating babesia.

yesterday he added Ceftin which if I understand correctly, this is to get the lyme in my brain.

I just took my first one along with the current babesia meds so we will see how that goes.  I already had a headache when I took it so hopefully it will be tolerated well.

I do not know about erlichiosis but I thought rifampin was mostly for bartonella.  I guess I have that as well.  Perhaps it is used for other co infections as well.  Like I said, I am still trying to get a handle on this disease and what to expect and when to worry etc.

When you say the brain fog is getting worse, like how exactly?  I have been totally stopping mid sentence and cannot find the rest of that thought process.  then I get upset because I am furious that I cant think straight. 

For brain fog, yesterday the dr gave me Andrographis Complex.  He said it would help clear my head.  We'll see.  I hate saying the wrong words but lately we just started laughing about it. 

It does sound like if yours is getting worse, then it must be really hitting it hard? 

I still have to come on here and seek answers, even if it is just reassurances that the current situation is typical. 

Right now I feel I am on the right track with current meds as I am seeing some babesia improvement.

I sure hope you start feeling some relief because I surely know how that neuro pain can be.

Did your dr ever mention iv abx to you?

 

Post Edited (scorp10) : 10/4/2011 6:08:57 PM (GMT-6)

I am in a similar situation, in that changes in meds stirred up new symptoms. The brain fog, which I didn't have as much before starting mepron, my LLND referred to as a "cerebral herx", which does make some sense to me. Some of the drugs busted my gut, this one is working on my brain. (At least someone is!)

Carrie  if your dr said you are herxing then at least you know that it shouldn't get any worse and it can only get better.

I was added Ceftin and today my head feels like its in a vice and at the same time, it feels like a person is reaching in with each hand and grabbing an eyeball and s q u e e z i n g until the eyes are blurred and numb.  (How's that for an analogy?)  It is awful but at least I know something is in my brain and fighting now.

How long you been on rifampin?  I have a feeling I will be on that at some point too.  And that is good to know that it also crosses the bbb.  I have too many brain issues to messa round with meds that dont get to the bulk of it, you know?

I dont think I have erchiliosis but who knows what else may show. 

I was just up getting a dopplar ultrasound to make sure no clots (there is NONE - yay) and as I lay there my whole left leg was numb-totally.  She had to spend alot of time trying to see that area.  I thought it was because it was numb.   I am sure that was a herx as well. 

I would be interested to know of any unusual brain herxes you have as well.  Yo me, this is the scary part-getting them out of the brain. 

Scorp: Great analogy on the eye pain. My eyes always bother me and are one of the first signs of herxing for me. My don't go numb but what I did feel like is that someone is reaching in a twisting my eyeballs around. That's what I tell my friends who are interested.

Although I've been dx with lyme for a year and having symptoms for almost two, I never really had the brain fog very bad. For me, it was mostly neuro type stuff with tingling/vibrating/pulsating, numb patches here and there that would come and go, trembling, etc. etc. Only since I started the new meds (Rifampina and Zithromax) have I had the brain fog so bad that I can barely think. Today and I am feeling much better than I did yesterday but I have days like that where I feel good one and crappy the next. As far as unusual brain herxes...not sure what you mean by that....I just cannot think straight, can't remember what someone told me five minutes ago, etc. I am also having really bad dizziness....when I bend over or tilt me head or move my head too fast, it's like my brain moves a second behind my movement.

Kramberry: I had a positive lyme test for Lyme and Erlichosis. The erlichosis titer was 1:60 which was the highest on the lab report which indicates disease states. I'm now down to 20. My last two blood tests have been at 20 which is why my doctor changed my meds because I guess the other ones I was taking were no longer working against the co-infection.

I must say that prior to these last three weeks (that is how long I've been on these meds) I have made a LOT of progress. My symptoms are not nearly as bad as they were and before this last change in meds, I was feeling pretty darn good with the exception of occasional flairs in tingling sensations. So, I am happy about that.

Anyway, thanks for listening everyone and I am praying for healing for all of us!!!

Hi Traveler:

You know, I have a far infrared sauna...have I been using it? NO. Have I been taking baths....NO. I have been drinking lots of water but that's about it.

Thanks for the reminder!!!!