It's baaaaack !!!

After less than 10 days of being off Doxy my nerve/muscle pain returned, back pain, shoulder  pain....the works!!

And....after getting out of bed yesterday morning I staggered uncontrollably across the bedroom and slammed into the wall!  

Severe vertigo insued along with a headache that bordered on a migraine and it lasted all day, all night and tied in with my stiff neck and back pain.

Miserable!  Still have it. 

I did call my PCP who said I had Labrinthitis and that it would just go away in a couple of days!  BAH!  Same doc who said I don't have Lyme because of negative test results!

Luckily this all happened right before my appointment with the new LLMD I have been waiting to see. 

After listening to EVERYTHING I had to say--- like someone who CARED (fabulous doctor!!!) he didn't even bother with a new blood test and put me right back on ABX--- this time Amoxicillin. 

He is certainly convinced I have a TBD and if I show improvement within the week on abx then we will delve further into more agressive treatment and possibility of co-infections.

Finally a doctor who LISTENED and took me seriously and did not think for one second that I have Labrinthitis....or Thoracic Outlet Syndrome or Fibro.   Lyme all the way! 

His only other thought was a possible toxicity in my system of some kind-- heavy metal for example-- and will arrange for a neurologist to see me IF my neuro pain and other issues don't respond to abx. 

But he doubts a toxicity is the culprit. 

Also....he felt I would not herx too badly this time, being that I was on Doxy for over a month. 

Head hurts too much to continue right now....but that's about it.....and I feel so much better (mentally) now that I have the right doctor! 

 

Now I am amazed !

After just three doses of Amoxicillin (prescribed by new LLMD)headache has diminished, back/neck/shoulder/spine pain has diminished and I'm not walking into the walls anymore. Still a bit brain foggy.....

....and happy YES....but skeptical that ABX can work this fast on a total relapse after going off Doxy???? But I was only off Doxy for maybe 10 days, so now playing catch up I guess.

Anyway...success so far!

I asked new LLMD why the Doxy didn't work after being on it for
six weeks (while I was floundering with advice from other doctors) and he said that some people just don't absorb it totally especially when it's taken with food, which I had to do in order to avoid stomach upset.

But long story short-- the Doxy just didn't kill the Lyme bacteria off enough, thus my relapse upon not taking it for a week to "see what would happen"--again this was advice from a less informed doctor.

But maybe my relapse which brough out my new symptoms of 'walking into walls....and brain fog (now I know what that is !!!) was a blessing in disguise because new LLMD got to see me while I was truly suffering!

Hopefully this fast response to new round of abx is good thing and and not just a fluke that means something else--- whatever that may be!

As many of us have said here....."you must be your own health advocate".... and never give on searching for the right doctor and treatment when you suspect Lyme or any other TBD.

I don't know what's in store for me next with my treatment-- but at least I am finding comfort and understanding with new LLMD who's treating my symptoms and not relying on my previous test results that came back negative.

Also......this board ROCKS !!!!

I see some new members....and you have come to the right place!!!!

Best wishes to all.....and I hope this new year brings us happiness and better health!

Thank you Traveler!

((((((( big hugs )))))))