I have finally seen an LLMD and have started Biaxin and Plaquenil. I have been on them 8 days and have seen no real improvement.
The headaches are almost unbearable at times. Burning, pressure, almost like someone is poking my head with hot pins. I have had a MRI and 2 CAT scans, all normal.
Has anyone else experienced these headaches? I have had the same one 24/7 for almost 3 weeks now. Nothing touches it. LLMD calls it the Lyme headache and tells me to hang in there.
I have never prayed so much for the pain to go away. If the headaches were gone, I could deal with all the other aches and pains.
Posted by SarahC (Member # 10054) on :
P.S. Has anyone's face and head also gone numb feeling. Not Bell's palsy, but numbness, like novacaine???
Also, after ABX treatment has anyone noticed symptoms that had gone away weeks ago and replaced by new ones are now returning, almost as if the disease is going backwards???
Posted by Tincup (Member # 5829) on :
Hey there SarahC...
Sorry you are feeling so much like a nasty toad right now. I think a number of us have been there.. and .. thankfully... lived to tell about it.
Let's see if I am close...
If you filled a bathing cap.. you know, one of those old rubber ones that fit yer head so tight you thought your brain would surely squish...
Well.. if you shaved your head down to the second layer of skin.. then filled that bathing cap with Texas Pete hot sauce.. and stuck that bathing cap on your head that was three sizes too small...
Is that what it feels like?
If so.. that is pretty normal for Lyme and Babesia.
NOT fun.. sorry to say. Your LLMD sounds right by telling you to hang in there.. and my bet is you want to tell your LLMD what to hang by (where to get off too) for telling you that? eh?
It is bad.. and VERY painful.. but if all goes well.. you will soon have some relief.
USUALLY the pain (due to a herx) gets worse before better. Sorry to say!
IF you don't see some relief soon though.. DO call the LLMD and tell them. They may suggest backing off the meds a bit.. or not. But don't let the pain make you nuts.. ok?
Too many nuts here already!
As for the eight days so far... hmmmmm...
It should take a good deal longer to see results. The longer you've had Lyme.. the longer it takes to KICK it's butt!
And yes.. you are exactly right. Often the symptoms come back that you hadn't had in a while... and they fluctuate too.
It's interesting you noted it.. but the symptoms often go in reverse. Like peeling layers off an onion .. then trying to put it back together again.
As for the facial numbness.. I often said my head (face) felt like a bowling ball perched on top of a stick.
Looks like the medicine is working for you. I hope you don't get worse. And do know someone is here to talk to.. okee dokey?
Good luck!
PS.. A cool wash cloth sometimes placed on the forehead seemed to help a bit.. although NOTHING took the pain away for any length of time... till the meds did their job.
Posted by alliebridge (Member # 9103) on :
I have noticed old symptoms returning(while new ones subside a bit)since taking antibiotics.
My face and scalp do go numb, as well.
I get severe headaches from time to time and have attributed them to Babesia though, not Lyme.
Posted by Sojourner (Member # 9424) on :
SarahC, Congratulations on starting! The symptoms going in reverse is exactly what my husband is experiencing.
He says it's like being in a time machine. He has had things happen that haven't been around in decades. Still others come back that we never associated with illness before his diagnosis and treatment--like night sweats and heart palps. When those came back we had already forgotten that he had them 4 years ago and attributed them to job stress. It was an Aha! moment for sure.
Posted by mtnwoman (Member # 8385) on :
SarahC,
Yes, I have always described my "headache" as a burning brain. It feels like it's a second degree burn about an inch below my skull. My left ear also has a burning pain.
I could have said that for the most part the buring has gotten better with abx tx, but I recently have had a flare in the brain burning....
Need to go looking for other causes and cures...
Hope yours go away soon!
Posted by *Daisy* (Member # 9593) on :
I have the numbness with flagyl. It is a potent drug. I always felt like my brain was on fire as well as different parts of my body when I first started treatment on Doxy.
Hang in there, its awful but you'll get through it. Don't let the herx get too bad.
Posted by SarahC (Member # 10054) on :
Thanks all! At least now I know I am not alone.
Tincup you describe the brain burning headaches very well!
Posted by SarahC (Member # 10054) on :
I am still fighting these brain burning, pressure headaches. 3 weeks now! UGH!
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