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
-------------------- hmom Posts: 4 | From Washington, DC | Registered: Dec 2010
| IP: Logged |
posted
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...
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
| IP: Logged |
posted
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??
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
| IP: Logged |
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!!
-------------------- hmom Posts: 4 | From Washington, DC | Registered: Dec 2010
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
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.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
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.
posted
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
-------------------- hmom Posts: 4 | From Washington, DC | Registered: Dec 2010
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Eek!]](eek.gif)
Printer-friendly view of this topic