Bartonella brain on fire

Like I said in the other post, my stupid Bartonella herbs are constantly different. I'm once more herxing because the dosage is suddenly higher. I hope the tinctures will bring more stability. They arrive at the end of this week.

These herxes are always horrible. It's not so much the pain, I'm used to that, but it's the massive anxiety. It's bordering on panic attacks.

My ex is back in my life. But sadly she has a new boyfriend. I can tell though that she still has feelings for me. There is definitely still something there. Because we're both sick we really connected. She sometimes leans on me, her boyfriend doesn't get it, and I lean on her.
But overal I'm not sure this is a healthy situation. I keep hoping she will leave him and we'll end up together. I feel like we're made for each other and that makes it very painful.

So how is this linked to Bartonella? Well, my anxiety about her is through the roof. It's really bad. When I think about her marrying that guy, things like that, I really don't know how to handle myself. It's really really bad.
I also feel very lonely, I'm very isolated. I have no one to talk to. Days go by without me saying a word. And have the fear that I will never find someone. All these things are usually in the background but herxing makes them 100 times worse. Because of the stupid herbs that differ per bottle I've been on this rollercoaster for a month now.

Anyway, I don't know, I'm just rambling. I feel super anxious and miserable.

It's just amplifying the symptoms I already had. It lasts +- 3 days then it stops. But 3 days of hell.
But because one bottle of sida only lasts one week. Every week I either go higher or lower in my dosage. Then the 3 days repeat.

Dear Vimzor,

I m sorry you are going through such suffering. I can feel it, because I m in a little bit similiar situation, living in a quite isolated way, struggling with lyme and co as well as accompanying psychological difficulties.

What maybe helps me is to distinguish what is physical and what is mental. Even intertwined, if i get emotionally triggered, and what you are describing with your ex, her being with other guy, must inevatably be triggering a lot of pain, sadness, especially when you say you feel lonely which I also sometimes do. I think people who have normal, healthy relationship and supportive partner have much easier situation. But I guess we are not hopeless, there is a lot one can do to feel better, to socialize more, to have some nice communication with others, talking to family members or friends, at least by phone. All these things tend to me help me, when I m feeling down. This aspect is more about how to take good care about oneself emotionally, which is really not easy if one has chronic lyme and co and lives alone. I think an extra care and attention and skilfulness needs to be applied. These days for example i going to swim to a nearby lake and meeting there any people, its already nice and relaxing and i m taking as part of my treatment (besides health benefit of swimming). I dont know if these words make sense or are encouraging, but again i really feel with you, even though you probably are more on herbs and i m more on abx.

Besides that I m also having active infection in the brain and sometimes gives me worry, thinking I should go to lumbal punction and get a very thorough spine liquid tested, to make sure its really bart there, since i recently I have discovered that chlamydia can infect brain too and be a cause of encephalytis/meningitis.

Lastly conversations with people here are helpful and precious for me and I like to say thank you to all friends, lyme warriors who contribute to this forum, which is such a nice place to come again and again, for learning, sharing and meeting others.

super long post warning - mainly because relationships with lyme and bart involved are just not simple...
================================================================================

I also lost a relationship due to this illness

I was engaged to be married to the first woman with whom I felt I could have a stable positive relationship. She was a very rare person. Bright, warm and empathic, strong but feminine, very pretty and very loving.
Unfortunately, we both became ill with lyme and bartonella after being bitten on a picnic on farmland near our home.

The first 3 years were extremely challenging – we were in a tailspin with what was happening in our lives – both became severely ill, experienced the roller-coaster of unexplained symptoms, we lost our jobs and became housebound with pain, overwhelming fatigue, crazy random health issues etc.

But we formed a strong team and despite the ongoing challenges, we pulled together and gradually started finding our way through it. We were together 24/7 for 3-4 years - we did everything together and were incredibly close. We faced every new challenge together in everything, communicated well, found moments of joy even in the depths of it and found ways of coping with the ongoing challenges.

Sadly, my fiancé’s mental health was affected by the disease. She experienced severe anxiety, depression, anger, uncontrollable rages, paranoia, mini seizures and delusions.

She was preoccupied by what she felt was the injustice of this disease. A disease that had robbed her of the life she had wanted and felt she deserved and caused what felt like never ending suffering.

She was tortured by thoughts like this, continually compared her life to the lives of others she saw online, or in real life, who she felt had it so much better, easier, etc. i.e. had the life she wanted so badly – she absorbed this selective sampling as reality – increasing her sense of injustice and suffering - and wanted some way to make it all stop (as do we all). But because of her mental health challenges – including things like problems with executive function - the skills needed to figure stuff out correctly (and perhaps influenced by poor advice from people around her that could not possibly understand what she was going through), she was not able to navigate this challenge rationally.

Instead, the anger and delusions took over, she began to blame me for her illness. Not explicitly at first, it began as intolerance and criticism over small unrelated things. At this stage I had no clue what was going on with her – other than she was not reasoning properly, had mental health issues and hence any little thing could trigger an attack of anxiety or rage – but gradually a pattern emerged of increasing intolerance and consistent criticism towards me, rages at me, distancing from me and eventually after years of building hostility, the outright accusation that I had made her ill and ruined her life.

I could see this hostility building and could feel there was some blame at the root of all of the anger she was experiencing (there is always blame where there is anger)– but was still staggered to hear her say the words that she held me responsible, when we had been such a good team – when I had supported and cared for her at her most desperate - and when we had spent years just being happy to be in the same room together no matter how mundane the activity.

When I asked how she had arrived at this conclusion - her reasoning for this was excessively simplistic, that she “was fine before she met me”.

In reality we were both fine and leading very full active lives before we met, both had good careers and well-paid jobs – we were both physically active and exercising regularly - and we remained so for over a year afterwards - and then both became ill with the same symptoms at the same time shortly after being bitten on that fateful day on a picnic.

A lot more pain and loss and past trauma came out later – but in essence – she had decided I was the root of all of her problems –and the reason she couldn’t have the life she had dreamed of. Her solution was therefore to get rid of me, so that she could be happy again.

She was fortunate that by this time she had recovered enough physically to go back to work – even though she was not fully well mentally - while I was still too ill to work and was now seen as holding her back, lazy, worthless etc

I know objectively I am not lazy - in fact part of the reason I got ill was from working too hard at my job. This is just what she needed to believe to sever the link.

When I tried to explain that I thought she was making a wrong turn out of desperation, and that it probably wouldn't make her happy in the long run - she shouted at me “well, I don’t have time for ten f**cking years of therapy!”

So, I think in her mind she was in a position that she knew it wasn’t the right solution – and what she really needed was to work through the issues that were really driving her unhappiness, things like grief, shame, trauma etc from her past. But she saw this as an impossible task that she simply couldn’t face – she wanted a solution right now, as her life felt unbearable – and so a kind of magical thinking – that I was the problem – and that if she got rid of me things would get better again - was what she came up with.

I am telling you all this to make the point that:

You cannot control what another person chooses to believe or feel – no matter how far off-base they are –or how painful it is - if it’s what they want to believe nothing you say will change that.

You cannot make an unhappy person happy – no matter how much you want to.

The upshot is, especially if you have health challenges – for the time being you have to focus on you – getting yourself well and making yourself happy in yourself – on your own as a stand-alone person – before you think about getting together with someone else.

Other people are not the answer to our unhappiness – if we give up our power over our internal state to others – we will likely continue to be unhappy or yo-yo from happy to unhappy depending on what others do or don’t do – which is something we have v little control over.

Instead, intimate relationships are more like the icing on the cake, once we have built a good foundation.

If we instead tell ourselves a story that we are unhappy because we have separated from someone we love and we therefore cannot be happy without them – we are telling ourselves an untruth and blocking from our minds the possibility of being happy in ourselves in a way we haven’t been before – or the possibility of meeting someone tomorrow, or next month or next year that could make us feel content in a way that we haven’t yet imagined.

In reality this person you have separated from is probably not as perfect as you currently think – after all anyone with chronic illness and anger issues has a lot to work through on their own inner life – and their relationships in the meantime are likely to be fraught with difficulty.

Even those of us not grossly affected by mental health issues from lyme and bart will often experience a kind of stuck thinking – where especially while going through flares or herx we can easily become preoccupied by negative thoughts, things we did and wished we hadn’t, painful experiences, loss etc - this is not normal healthy processing – its just a loop we can get stuck in due to brain inflammation etc. The best approach to this is to learn how to identify when we are in such a loop – and then find some way of breaking it, distracting our minds with something more positive is one useful approach - for example a meditation, time in nature, an audiobook, talking to someone else etc - as herx reactions are an inevitable part of treatment and getting well - but nothing good comes from these repetitive ruminations.

These are my reflections after going through my own separation from someone I loved deeply - but am just a little further down the road in my own journey at this point and perhaps have gained a little perspective.

Its part catharsis for me – but I hope something in here is useful to you

All the best

Garzie, I'm sorry that happened to you. I can sense she was very special to you and it caused you a great deal of pain. I hope you can find someone to be happy with.

Your story sounds very familair. I was also accused of being the reason her health became worse. And I was also very caring and supportive.

Garzie said...
The upshot is, especially if you have health challenges – for the time being you have to focus on you – getting yourself well and making yourself happy in yourself – on your own as a stand-alone person – before you think about getting together with someone else.

Other people are not the answer to our unhappiness – if we give up our power over our internal state to others – we will likely continue to be unhappy or yo-yo from happy to unhappy depending on what others do or don’t do – which is something we have v little control over.

Instead, intimate relationships are more like the icing on the cake, once we have built a good foundation.

I know a lot of people say this but when I was with her my health was so much better. She had a healing effect on me. She also made me less anxious, I only went to the doctor once in six months when I was in Brazil. Usually I go at least once a month, out of fear. She calmed me a lot. And this might sound weird but I think a loving and caring girlfriend would be the best medicine for me. Before my adventure with her, I was single for 13 years. I've waited more than long enough. If I wait until I'm healed I will be too old. I think it's only bad when you put all the pressure on the other person, all the responsibility for your happiness on them. That would be bad. But that's not what I wanna do. I just think my life would be better with her by my side.

Garzie said...
In reality this person you have separated from is probably not as perfect as you currently think – after all anyone with chronic illness and anger issues has a lot to work through on their own inner life – and their relationships in the meantime are likely to be fraught with difficulty.

I don't think she's perfect. She has many flaws and is a very demanding person. :p And her illness makes life harder, even when I will be cured it will still be a life of doctors and health crises. For the rest of her life. It's a difficult life. And there is always the risk of losing her at a young age. It would be way easier to pick someone that is healthy.

And yet, I would still willingly choose to deal with it all to be with her.

But it's just a fantasy at this point. I'm actively trying to find someone else. In fact, I had a date on Friday that was cancelled last minute. :p

Garzie said...
Even those of us not grossly affected by mental health issues from lyme and bart will often experience a kind of stuck thinking – where especially while going through flares or herx we can easily become preoccupied by negative thoughts, things we did and wished we hadn’t, painful experiences, loss etc - this is not normal healthy processing – its just a loop we can get stuck in due to brain inflammation etc.

Yeah, this is actually what I mean when I say my brain is on fire. My brain is stuck in a doom loop and it feels like the worst depression, everything is terrible and everything is hopeless.
I will have experience it again this week. Hopefully now for the last time. I'm gonna start using your weighing scale tip and then hopefully things will finally be stable. It's a good idea, thanks again.

Good Luck Vim

i find audiobooks good for distracting the ruminating brain at bedtime during herx

in the day i like walks in nature - meditation - or anything else i can distract myself with