Chronic Lyme Disease Group

Anyone else suffering from Lyme and co-infections?

Maybe..??

-Following..

 

I had it in 2013 and don't know if I'm chronic now.  I tested negative for it a year later. 

I have been interested in getting tested for it even though it's likely just benzo symptoms. I wonder quite often if I have Lyme disease because my symptoms, and my pastime is amateur archaeology. I've spent days outside exploring in different places with ticks. The testing would be nice to put my mind at ease either way.

I had a huge bulls-eye rash around the bite.  It was very obvious.

I had a huge bulls-eye rash around the bite.  It was very obvious.

 

I had one of those a while back and at the time had no idea it could be from a tick bite. I remembering wondering if it was some kind of ring worm. It went away though so I didn't think much about it. I can't even remember when it was, just that it was before I had benzo symptoms.

 

Do you know how reliable the blood tests for Lyme is?

Testing is very inaccurate, more people have it then we will possibly ever know. Alot of Lyme Disease mimics other diseases such as fibromyalgia, MS, Lupus. Anxiety is a very common symptom. I was put off by many "mainstream" doctors for years. It was horrifying. Last year around this time I finally visited an alternative medicine doctor who specializes in Lyme and finally got into treatment, it wasnt cheap ( insurance isn't accepted). It's heartbreaking what people have to go through just to get an accurate diagnosis alone...and the right doctor to believe them!

 

I had a postive Lyme titer even before I got a full-blown case.  Alot of people get Lyme and don't even know it and get over it just fine.

Not me, I've had it possibly well over 20 years. Congratulations to the ones that got into treatment early and got over it just fine with no further complications. Healthy immune systems play a big part, too. They truly are very blessed. But there still are many many ppl out there not believed and misdiagnosed with other things and eventually left in the dark. I mean it when I say I wouldn't wish this on my own worst enemy. The CDC refuses to even acknowledge chronic lyme. Unfortunately, there are ppl with it alot worse than me.

I may have chronic Lyme and not even know it.

Becksblue if you feel OK then alright. U would still keep an eye on future symptoms, if something doesn't feel right pay attention to it. Some people can be asymptomatic for years. As they get older and in times of stress or crisis ( like what's going on now) that's when itll become more noticeable.

My CNS is already damaged beyond repair, so I wouldn't know what would be chronic Lyme and other stuff.

If you ever want to look into it further ( up to you) there's a forum on another site about it and the confections that usually are involved, lyme.net  There's plenty of resources listed and other people you can communicate with, just like this site.

BUMP

I was 8 or so years to diagnosis. In 1993 a rule-out diagnosis was done and was called late stage chronic neuroborreliosis. There were few tests then and certainly none accurate. Treated on and off for 14 years with multiple courses of IV, IM and oral ABX, antivirals, antifungals, antiparasitics. Several years in I got a positive test from the first urine antigen tests from out in CA. It took several years to get a positive western blot.

Eventually, someone began treating me for the Babesia macroti. Miserable tx, ugh! But definitely a major turning point.

 

I walked away after that (15 years ago). Pitched all my diagnoses and decided to reevaluate what I really wanted and needed. I needed to be out of pain so I looked for an osteopath that did OMT. Found one a mile from my house. That and a lot of PT (hands on... craniosacral/myofacial release, viseral manipulation, etc). The combination took pain levels from 7-8 to 2-3. There was a lot of processing as all kinds of whacky stuff was stored in my body. It also lead me to a spiritual journey that might have never happened. I live in another state now and haven't access to my favorite PT, ever.

 

So where I am now... I accept I may never be like other people as far as energy, meds working right, being pain free... I'm being me the best I can. Pain is around 5 most times. I take a lot of time for myself and do what I can as I can.

 

Tested + for:

Lyme

Babesia macroti

EBV

Coxsackie B

Hep C

Bartonella (unconfirmed)

 

I've been away from Lymenet for most of 15 years. I had a different name there.

 

 

ps. When I stopped everything I didn't stop the benzos. It never crossed my mind until a few years ago.

pps. I never had a tick bite.

 

I got Lyme in 2014 and I'm convinced it was from a mosquito bite.  I never remembering having had a tick bite.

I got Lyme in 2014 and I'm convinced it was from a mosquito bite.  I never remembering having had a tick bite.

I think my original exposure was probably mosquito bites. What put me over the edge was being in a house that had a flea infestation from the white footed mice and deer in the yard. Pfft... that's when it got worse.

 

And my post above, I don't mean to scare anyone. I forgot to put in I had bad whiplash from a rear end collision after my first course of tx and was doing good. I couldn't pull myself up out of that hole again.