Hi, About two 1/2 years ago I became infected with lyme. However my symptoms started cognitively first. Ear ringing, brain fog, feeling of disconnection, confusion, head aches, breathing issues, yada, yada.
I never had any major joint pain to deal with though. I finally found support and found a good LLMD. So I have been taking abx's now for almost two years.
I have felt about 70%-80% better over the last year or so. Once I go off the abxs the symptoms come back. What I'm worried about is as of recent I have had more odd body pains and floaters in eyes are becoming worse.
The other night I was shopping and I had this pain in my chest and back hit me out of no where. I could not move and every time I would breath it would hurt very badly. I started to get disy I could not sit down or move. So I stood, then eventually laid down.
I was able to find some pain medication and that helped me get to a point to where I could move again. The pain was gone the next morning.
What I'm worried about is I spoke with a lady in our support group and she was very concerned saying people that start out with cognitive issues first have it worse in the end.
That kind of scarred me. I did see a study that showed people with cognitive Lyme did become better on long term IV.
Has any one else had cognative issues first?
Posted by Geneal (Member # 10375) on :
I think what I've heard is that cognitive issues are usually the last to resolve.
Now as to if I had cognitive issues first, I don't remember.
I remember the joint pain, but I also remember having short term memory issues too.
Speech problems about once a month too.
I wouldn't worry about what came first....the chicken or the egg. (My humble opinion of course )
Have you been checked for co-infections?
If you don't get rid of these then you won't get into remission with the Lyme (as per my LLMD).
Hang in there.
Hugs,
Geneal
Posted by hcconn22 (Member # 5263) on :
Get tested for co-infections.
Posted by adamm (Member # 11910) on :
They were my first problems.
Posted by Boomerang (Member # 7979) on :
Except for a few minor aches and pains, they were my hubby's first problems. Posted by daise (Member # 13622) on :
Hi tickfighter,
Sounds like it only took 6 months and you were right on top of it.
For the middle of the country, that's lightning speed!
I'd get tested for coinfections from your LLMD. They're common with Lyme. But testing doesn't always catch coinfections. Like Lyme the coinfections are a clinical diagnosis.
Ho, hum ... it all takes time.
You mentioned floaters are a problem. If you ever have flashing lights (there is no mistaking them) then get to an opthamologist right away--that day if possible, no later than the next day.
If it happens on a weekend, go to an ER, but call ahead to see if they have an opthamologist available. If you are loosing your sight, they may very well be able to save it!
I don't mean to scare you, but it's something to keep in mind ... just in case it happens.
Hang-in there.
daise Posted by jocus20 (Member # 11576) on :
Hi Tickfighter,
Mine started with cognitive stuff exactly how your was. It started with the derealization and vision problems. The joint and muscle pain and stiffness came later. I have alot of trouble getting rid of that cognitive stuff but i know that it will be the last to go.
Ive done alot of different antibiotic therapy and while it improves it never goes away. Im very frustrated about it.
Just wanted to let u know that i can relate.
Joe
Posted by tickfighterstl (Member # 11947) on :
Thanks everyone for your advise and support!
As far as being checked for co-infections go the answer is no I have not yet.
As far as being checked for co-infections, my LLMD does not think it is necessary. LLMD thinks the same abx's we use to treat Boreli will treat the co-infections also.
LLMD has had me take almost every type of oral abx so far. A few more to try though. So I can see where he is coming from.
Thanks for the info on the flashing lights! I have had tracers, and things warp out for a second or seem to move then everything goes back to normal.
Also I see like a aura around things at times. And streaks jetting through my vision, but not blocking my vision. I can see through them however they are distracting.
I think a lot of the tracers are do to the floaters though... But not the flashing tracers though.
Thanks for letting me know I'm not the only one that started having cognitive symptoms first.
Thanks all!, It is frustrating. I'm very thankful though that I do have my brain back while I'm on the abx, still can't spell but thats OK!
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