Did anyone ever

There are varying degrees of dysfunction with this aspect of Lyme - even during the course of one person's illness. I had bouts of depression, anxiety, rage (got severe from time to time), paranoia (got really severe once) depersonalization, derealization and all kinds of cognitive/memory issues. All are very common.

We have had some members with only psych/cognitive issues, and some without any psych/cognitive issues. This is one of the reasons why Lyme is so hard to pin down.

And don't worry, we understand that although you don't want Lyme, a diagnosis would be wonderful so that at least you know what you need to deal with. I think most, if not all, of us have been there!

And mazerunner - I used to go into stores with a big floppy hat, my MP3 in my ears and sunglasses on. That was the only way I could avoid the over stimulation which caused me to get so mixed up that I couldn't find the front door to the store to even get out. I got a LOT of strange looks, but at least I didn't have to grab an employee and ask frantically where the front door was so I could get out of there. I usually had a pretty good panic attack outside if I waited that long. So I learned to wear those things so that I could at least function some.

Actually, the longer it is from the time you actually acquired the infection, the less chance you have of testing positive. Sorry!

Again, it's the symptoms that are more accurate than any of the testing that is available at this time.

One thing that no one has mentioned is are you on any meds that can cause these symptoms? Some medications can also combine to cause these kind of symptoms. My family tells me at time that I have had conversations I don't remember.

I am on Ambien and it is a med that can cause amnesia. I frequently have conversation, perfectly coherent that I don't remember but there are other meds that can also cause problems.

Sometimes fatigue and pain can have an additive effective on meds. I once scared my family when I took Soma and added completely weird. We were traveling and had spent about 24 hrs awake. We got to the hotel room and everyone else passed out. I figured I was ok to take the soma, so I did. Apparently, everyone else woke up and "we" decided to go get breakfast. I was able to walk and talk but something caused my family to realize I wasn't "all there". They walked me back to the room, but not before having complete strangers ask if they needed help. I must have seemed completely drunk. I don't remember it at all.

I scared them pretty bad. So I have learned not to take the soma if I am behind in sleep unless I am not going anywhere. If I have to drive or other things that take complete coherence, I will skip certain meds until I can just crash at home. But some meds are definitely additive.

I'm not saying that Lyme&Co can't cause this, but sometimes it's a combo of things, so try to control the things you can control. For the things you can't, your family needs to step in and learn what signs indicate you are having a bad neuro day.

Conspiracy theories concerning lyme?

I asked my LLMD about them, and he said he had spoken to someone who worked on the island, and he confirmed that a lot of the conspiracy theories aren't "conspiracies". Particularly about the man who was in charge of running the island.

He's a pretty well respected doctor, so I doubt he'd be embellishing.

If I were you, I would NOT get a spinal tap. I have heard that testing the spinal fluid can still show a false reading! Even if you have a lot of neuro symptoms.

Uhm, yeah - don't get a spinal tap. I just removed that from the post you found it in, I believe. Sorry!!! I can only guess at how that got put in there.

Spinal taps are not helpful in getting a positive except for the rare case that will get tested that way. The spinal column is an enclosed compartment from the rest of the body. There is no need for blood to get there, so even the brain is more permeable than the spinal column. It's very difficult for the bacteria to get there, and even if it does, it has to be in a very high concentration for the tests to even pick up on it.

In short, the risks are rarely worth a spinal tap for diagnosing Lyme.

Hi Ghost,

I think the reason people are advising you to not get a spinal tap is because there are a lot of people who have been injured (permanently) from this procedure. Look on some spinal tap forums to read these people's stories. Many have been paralyzed or have permanent back pain, or have lost feeling in their arms or legs.

It's a risky procedure, even though the medical community won't admit it.

You probably have lyme and a co-infection like babesia or bartonella, or maybe protoza. I feel exactly the way you do. Your description is exactly what I have. I feel like I'm on drugs all the time. It sounds like that's the way you feel too.

My LLMD is just treating me for all lyme/co-infections that exist through antibiotics. The idea is, we can't really test for all the co-infections (there's hundreds of them and the testing is inaccurate and expensive) so we're just going to treat for everything. He said it can take up to a year to treat for all this stuff.

This is a leap of faith for me. My doctor has a good reputation so I hope he knows what he's doing. Many people have been healed by him, so I need to keep the faith.

My recommendation is to find a good lyme doc in your area, and get him to treat for everything. If you came back positive for lyme, then you probably have lyme and co-infections. You can't really test for them all, so just treat them and hopefully you'll kill the buggers.

I mean in the begining i felt bad,I felt like id pass out or have a heart attack at any second.Now it feels like im hanging onto sanity by a thread,All these thoughts,All these weird feelings the way my surroundings feel it just really feels like im losing my sanity.