I am an oldie but now I am back. Diagnosed Lyme encephalitis and treated for 4 years. 3.5 oral .5 Rocephin. 30 years undiagnosed.
I have been doing fairly well. I even got out out of bed as they predicted I would not. So all things considered I was doing great!!!
Had some dental work done a month ago. I was put on Flagyl by the dentist. It was a 3 week course because work had to be split into 2 appointments.
Holy Mary Mother of God it was pure hell 10 days in. All my old Neuro stuff began with a vengeance.
Photophobia, tinniitus, Head aches,stiff neck, muscle aches and twitches from head to toe. I could not wait for it to be over.
It took a good week before I was able to go outside and feel better.
Problem is now I am having pretty constant head aches with a brutally stiff neck!!!
I thought I could ignore this. Problem is it will not let me.
During my previous treatment Flagyl was not on my antibiotic menu.
I see it used for Lyme Encephalopathy.
I am interested in doing a clean up if required. What are the latest protocols in treatment?
I am hoping this time treatment can be shorter. I was thinking 6 weeks of IV while pulsing Flagyl.
Any insights?
God Bless you all.
Paul
Posted by prconn (Member # 7113) on :
I know I will need another lumbar puncture. looking forward to it. AS last time it was instant relief.
Should this be sent to Igenex? What should they test for specifically?
Posted by surprise (Member # 34987) on :
Lumbar puncture? No!
Flagyl for the dentist, that's new, usually it's a different antibx. Anyway, Flagyl is a cyst buster w/ Lyme.
Do you have a LLMD? Might want to call.
After being off antibx and treatment for a good while, I had gallbladder surgery in Dec.
I felt I flared Lyme infections after surgery. I ended up doing 2 short (10 day) rounds of antibx., I was having fevers (never happens),
wasn't viral sick, and wanted to make sure wasn't new infection from surgery.
I did herx on those 2 rounds. Differently, but nonetheless. I think I will always stir up and hit old junk probably. So I don't want antibx ever unless necessary.
Sounds like you stirred up Lyme. Question is, do you want to treat or try waiting it out?
Posted by prconn (Member # 7113) on :
i will treat and Igenex does take spinal fluid. Last time headache and cranial pressure was gone instantly,,, PICK ME ...PICK ME...
Pain was easy breezy last time... When you have had terrible pain since childhood pain all becomes relative.
So my threshold is very high!!!
Thanks for your thought.. I do have a great LLMD.. just don't see him until Friday.
Posted by surprise (Member # 34987) on :
Okay, glad you are getting in. I understand headaches. Ice packs on the head, please knock me out kind.
I also understand carrying these infections for decades, not knowing, living with the symptoms, not knowing what 'normal' or feeling better is, until you finally get some (better).
I'm assuming you don't need the probiotic, liver support, get your diet in order advice :-)
Posted by prconn (Member # 7113) on :
I am good there as well. No preservatives, dairy or refined sugar. Removing those things from my diet changed my life!!! Leary of food I don't see being prepared.
Daily I take my chilled all the active cultures probiotics you can get.
Coq 10, immunoglobulins/colostrum, adrenal fatigue, d and the list goes on and on.
Endocrine System,
My pituitary hypothalmus are out of wack.Thryroid a mess. I take Synthroid for that. Testoerone it was in the toilet and Cialis for BPH.
Btw..FOr the first time in my life when I started the Cialis my ankle and wrist pain stopped on a dime.
I am sure it will help with antibiotics to better penetrate all my dark places.
Immune system trashed... Was going to have to have someone else's immunoglobulins infused monthly. If the Immunoglobulins/Coloostrum supplements did not work.
I will get the same chest cold as my entire building. Mine is over in a week to ten days. They can be coughing for weeks and months. It has been nice not to fear the germy world the last 2 years.
Of course I need some anxiety/sleep relief. Klonopin for that, which I rarely use anymore since starting Trazadone 6 years ago. Get just out cold sleep with that and Paxil for anxiety/Depression.
I just turned 50 last week, I was told at 37 I would never get out of bed. I am walking, talking, biking and landscaping. Sure, it is at a snails pace compared to others my age.
So for the most part I am in a happy place... Coping at times can be a struggle physically and mentally. I always get to the point where I remember I am still alive and grateful.
I apologize for the rant or any mispellings. Have a lot of word retrieval issues since the flagyl too.
God Bless
grrrr
Posted by surprise (Member # 34987) on :
I can relate to a lot of what you wrote, except put to not getting out of bed disabled.
Thrilled to read of the progress you made. You sure worked hard/ endured treatment for it.
Thank you for sharing, hope your appointment goes well Friday. S
Posted by Lymetoo (Member # 743) on :
Hey pr!! Good to see you .. or not??
Sorry to hear about your recent episode. Some of the symptoms you listed could be from the flagyl itself. Be very cautious with that stuff. Some symptoms (such as nerve pain and other neurological stuff) can become permanent if the drug is continued.
I'd be willing to bet your tinnitus is from the flagyl. The twitching and photophobia may be from the flagyl also.
I hope you can find the answer.
Spinal taps .. no way for me. I'd have to be on the verge of death. If you have to have another one (not sure WHY you would need one????) .. then I hope it goes well for you.
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