This is topic Seasoned Bart Warriors-Personal Question in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/127503

Posted by GretaM (Member # 40917) on :
 
I need some help.

How do you know when your thoughts and emotions are genuine, or are part of a bart flare?

Was on rif and zith, along with lyme meds for about 10 weeks. I didn't feel like rif and zith was working anymore, doc said try levaquin. "Stop all bart abx for a week, then start levaquin."

I am two almost three days off bart meds.

Some symptoms I was attributing to bart, have gotten BETTER since stopping bart meds.

-headache is gone
-neck stiffness is gone
-brain processing speed is faster
-energy is BETTER

Only one symptoms has gotten worse since stopping the bart meds:
-Insomnia
(Took a sublinox last night-didn't work)

For a while, I have been wanting to make some changes in my life regarding some relationships I have that cause me more stress than peace... But I have been too exhausted and too brain fogged to come up with a plan to make these changes. also incredibly passive.

The last three days I feel empowered, and am ready to make these changes.

However, I have been under "bart's spell" before, and I know that bart leads me to be impulsive and go-go-go.

How do I know if the 'plan' I have come up with is genuinely my mind and soul, or is just bart impulsivity?

[ 01-10-2014, 04:01 PM: Message edited by: GretaM ]
 
Posted by CD57 (Member # 11749) on :
 
Ah, a tough one. I struggle with this too. The best way I know it's Bart and not ME is that feelings thoughts emotions appear suddenly, like a flashing motel sign, and often disappear just as quickly. I have read where people say that Bart changed their personality so I get what you are saying

By the way, my old doc would say its time to go up on the Rifampin dose when it seems like its not working. Is that a possibility for you?
 
Posted by GretaM (Member # 40917) on :
 
Hi CD,

Thanks for replying.

It is very hard to differentiate between the impulsive ideas I get as bart, or as brainstorming.

If my ideas tend to have swearing, conflict or accusational words in them, then I can figure it as being a bart moment.

But it is so hard to tell.

It's so difficult to make any life changing decisions or plans/actions with lyme and bart.

Lyme drains energy, and bart puts a skew on things

[Frown]

I tried 900 mg/day of rif with zith for 10 days and didn't notice a change. It wasn't my docs orders, I did it as an experiment myself.

I am really trying to load the magnesium and vitamin C up for levaquin.

Thanks for your thoughts, CD. I greatly appreciate them.
[kiss]
 
Posted by Judie (Member # 38323) on :
 
Hi Greta,

This is a really good question. These illnesses and meds change us so much.

Perhaps going back to what you know. If certain relationships are causing you stress, and it seems to not matter if you're on meds or not, that's important information.

Limiting your time with people who stress you is important no matter what's going on. If you're feeling stress, you're feeling it.

As for the meds. Ack, I had to stop rifampin and zith because they changed my personality so much, I could not function.

Rifampin made me completely detached from my environment. I was a totally different person on it. I was exhausted, however it also made it impossible for me to relax. I also lost my ability to feel things (via touch) or hear things. The only emotion I felt was irritation.

Zith made me have rages and impulsive behavior.

Eventually my neck swelled up and broke out in a rash on them.

I took them at different times. I don't know what would have happened if I took them together.

I'm seeing my doc in a week and asking what to do next for Bart.
 
Posted by surprise (Member # 34987) on :
 
Don't make any life altering decisions right now.
Write it down for yourself,
and sit on it for a few days, a week.

This subject is very provoking to me personally,
and I hesitate to share my own bartonella dirty laundry.

I will say this, after going through intense LLMD treatment for Lyme and Bart, which has included just about every Bart herb and antibiotic protocol,

I am not sure it's gone. I am not sure I can ever get it all gone.
However, my life has changed since starting treatment.

I did indeed make some adjustments in a few relationships, mostly by recognizing I don't have to participate.
I can say no thank you, stay quiet, or not go and stay home.

My memory is a whole lot better, I no longer have daily all day headaches, I exercise, am healthier than ever.

I also needed to relearn how not to live manic.
To lay down and rest if I need to.
Manic served me well in a past career,
it does not serve well in real life.

One thing Lyme taught me very clearly:
No-one else will take care of us but us.
No-one.
So I am learning how, getting better at it.
 
Posted by GretaM (Member # 40917) on :
 
Excellent feedback Judie and Surprise.

Thank you both for taking the time to reply.

I have said and done a few things in a bart mood, and while I don't regret persay, I feel there is many ways not as destructive to get my points across.
[shake]

My bart storms used to be full out hurricanes and destroy everything in their paths.

I will write some things down, and then tuck them away.

If I feel the same way in a month, I will make some changes.

Judie-perhaps it was the rifampin that has made me so passive. I know it killed some bart, as my leg pain is gone. But I sure didn't like being as passive as I have been the last two months.

I've been avoiding people because I've felt like a doormat. Even though I haven't been treated like a doormat, but knew if I was I didn't have the mental clarity to stand up for myself effectively.

Surprise, you are right. I can say no thank you, etc and just not interact with those that cause undue stress.

Thanks so much. It is so nice to be understood.
I'm so grateful for you three and the other folks on LN.
 
Posted by surprise (Member # 34987) on :
 
By the way, I am now not 'saint surprise'
and perfect at the polite 'no thank you'
and completely zen.

Lots better tho!

Also,
Rifampin and hormones can be an issue,
exert from drugs.com

'Rifampin has enzyme-inducing effects that can enhance the metabolism of many endogenous substrates, including adrenal hormones, thyroid hormones, and vitamin D, the latter of which may affect serum calcium, phosphate and parathyroid hormone levels.

Patients with preexisting imbalances of these hormones should be monitored more closely during long-term therapy with rifampin. In patients whose hormonal condition is stabilized on treatment, adjustments may be necessary in their treatment regimen to compensate for these effects.'
 
Posted by Judie (Member # 38323) on :
 
"Even though I haven't been treated like a doormat, but knew if I was I didn't have the mental clarity to stand up for myself effectively. "

That's what was happening to me on rifampin. Mainly because I was so disconnected. I didn't have much urge to socialize.

One relative said he wanted to snap his fingers in front of my face to pay attention. I just wasn't there.

I started boluoke right after discontinuing rifampin. That's been the complete opposite reaction. I feel more connected and some of the brain fog has cleared.

I'm not making ANY life altering decisions until I have more of this illness under control.

"I feel there is many ways not as destructive to get my points across. "

I started studying compassionate/non-violent communication by Marshall Rosenberg a couple years ago. That at least has helped me monitor when I'm tempted to say something that was not what I meant.

Zith made me feel way too out of control, this is why I stopped it. It wasn't good for me or anyone around me.

[ 01-10-2014, 07:47 PM: Message edited by: Judie ]
 
Posted by Judie (Member # 38323) on :
 
I just thought of another curiosity while on rifampin. My taste in TV totally changed. I was entertained and laughing at shows that weren't my taste at all.

I tried watching them without the rifampin and all I could think was, "I was enjoying this????"

It was really weird. I really felt like something emotional and/or physical had switched off in me while on rifampin.

Perhaps, as a non-scientific experiment, try watching some show you enjoyed while on the antibiotics now that you're off them and see what happens.
 
Posted by rera2528 (Member # 29886) on :
 
Greta, I definitely understand where you are coming from. I have been very tempted to make a job change over the past few months, but I have hesitated since I don't know exactly what is motivating me.

I have requested to reduce my hours, rather than make a complete change. I am "trying out" a moderate change. It doesn't sound like you can do that with what you have going on, but I am aware enough that I know I shouldn't potentially torpedo my life as it is due to a bart mood swing.

Man, this stuff is hard!
 
Posted by GretaM (Member # 40917) on :
 
Well I had a chuckle at the surprise's saint comment and at Judie's TV shows.

It is SO true!

Rera! I am completely getting where you are coming from.

Some days I think I have been so selfish with my life and think I should up and work for a 3rd world charity.

Which of course I would love to do.

With a plethora of TBD and declining mental status? No.

But that thought pops up about once a week and I trawl on charity website trying to figure out which one is doing the most good.

Sigh.

Well thanks for talking me down, CD57, Surprise, Judie and Rera.

I feel less impulsive, more grounded since reading your comments.

Judie-I need to check out that book before I smash and destroy anymore bridges.
 
Posted by grandmother (Member # 19908) on :
 
Try keeping a kind of diary where you write down the things these people do. Look at it when you think you're in and out of a bart swing. It may be easier to make a decision.
 


Powered by UBB.classic™ 6.7.3