I am new to this board but not to Lyme. I think I had it at a very low level for many years, flared up about 5 years ago, then gradually got worse until I was diagnosed with Lyme/Ehrlichia in April of this year. I have been taking Minocin 100 mg twice a day, and my symptoms really abated from where they were in the spring (which was pretty unbearable)- I had gottten about 80% better over eight months, with some less serious flare ups. Suddenly now I have a horrible relapse that feels just like it did at first. My symptons are HEAVY neurological: prickling, tingling, itchy feeling all over; way overexcited nervous system; migrating tootache-type and sharp pains; extreme irritability; loud ear ringing; gets really bad at night (which makes sleeping very difficult). It started about a week ago, low level, and is steadily increasing. I expect it will shortly get to the point where my nervous system is in chaos, which is what happened to me before. Before I started treatment, a flare of bad symptoms would last a week to ten days or so.
So my question is, does this mean the Minocin isn't working?? Has anyone else felt so "back to square one" at this point and it turned out to be a herx? Could that happen this far into treatment? And how effective is Minocin anyway? The higher dose does make my head feel swollen a lot, and I think that makes the ear ringing worse. I also think symptoms get worse in the winter (my immune system is lower?)
I know everyone's experience is different, just looking for some encouraging words! Does any of this sound familiar?
Thanks
Posted by Lymetoo (Member # 743) on :
What have you been taking for the Ehrlichia??? Mino does nothing for that and mino by itself may not clear Lyme completely either.
Do you have a good LLMD?? Been treated for babesia or bartonella yet??
Welcome!! Posted by annier1071 (Member # 28977) on :
HMOM...I am having the same symptoms right now and new to all this but cannot find anyone that says they have them. I am on oral omnicef(now used for neurolyme) by DR R...3 weeks into treamement my ears are ringing so badly escpecially at night, I have horrible nerve pain shooting behind my ears that I cant figure if its a tooth nerve..but on both sides? I have nerve pain in my face,both sides and can hardly stand..It feels like every nerve in my body is jumping and ready to collapse. I cried all day today...was awaiting western results this week and ins approval for iv rocephin...but thinking of giving up on this whole thing..I feel worse than when I started...all of a sudden these two days are horrible and all I want to do is lay down....I wont give in an be beridden...
Posted by annier1071 (Member # 28977) on :
HMOM....overexcited nervous system...you named what I am feeling...and both ears and eyes started itching inside since I started abx.... sounds like we are one in the same. I have not called my llmd since we met three weeks ago...but I am going to call Dr R. tomorrow and see what this is about...some say "hex" but Dr R.believes very few people hex so I am confused. He thinks that many just wait for problems to occurr and then a simple headache becomes a hex? He is suppose to be the top lllmd in NY....wondering??
Posted by Lymetoo (Member # 743) on :
Nearly everyone herxes. It's a lucky one who doesn't. He's not the Numero Uno, btw.
Posted by HMOM (Member # 29687) on :
Thanks for the fast responses!
Lymetoo, What is the best treatment for Ehrlichia? I thought the Minocin was it? I also thought it was good for neuro lyme, was I wrong?
I tested negative for both babesia and bartonella, but tonight I happened to see a picture of bartonella scratches that are EXACTLY one of the weird symptoms I've gotten on and off for years. So looks like that's a factor. What is the best treatment for it?
annier1071, sounds like a herx, even though I am not an expert!!
Posted by Abxnomore (Member # 18936) on :
One could say it's a herx but it's clear her entire nervous system is inflamed including her cranial nerves from the illness. The ABX is getting at them, doing what it should be doing and hopefully killing off ketes and exacerbating things in the process. Annier if things are that unbearable you should speak to your LLMD.
Erlichia is usually treated with doxy. Bart is usually treated with rifampin and levequin. Not sure it you use them together or not but someone will know.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Abxnomore:
Ehrlichia is usually treated with doxy. Bart is usually treated with rifampin and levequin. Not sure it you use them together or not but someone will know.
Right.. not sure about rifampin and levaquin together .. don't think so. I sure wouldn't try it myself.
So I looked at the Burrascano guidelines, and it sounds as if Bartonella should be strongly suspected if the neurological symptoms are out of proportion to other Lyme symptoms. Most definitely the case with me...I'm going to talk with my doctor tomorrow!! Not the most experienced, but very willing to work with me
Posted by Lymetoo (Member # 743) on :
Find an experienced doctor ASAP!
Posted by Pammy (Member # 15695) on :
I have all of those symptoms too right now. I think the ear ringing is worse at night because it's
quieter. The nerves in my arms especially are bad and sometimes makes me tear up because of the spasmy
nerve pain. Not sure how to explain it. I started Cefdenir over 4 weeks ago. Could I still be
herxing?? Or else it's just another flare. I've had this before and it has gone away on its own.
![[Smile]](smile.gif)
![[Eek!]](eek.gif)