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Wednesday, 20 August 2014 02:00

Esther's story, updated: 'A zoo and a soup brain'

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Update by Esther in August 2014: 6 months ago I wrote on this blog. So I thought it would be a good time to write an update about how I'm doing/feeling now. A lot of people are asking me if I'm not healed yet or why it is taking so long.

In my first blogpost I wrote about how expensive my treatment is and that my insurance company is paying nothing. I have really good and hearth-warming news about this. The 1st of May it was my 27th birthday and at my birthday party my amazing friends came with a gift which made me very quiet. And the people who know me well know that it takes a lot to make me quiet ;-)

They gave me a 'piggy bank' with a tiny card in it. But that tiny card told a really BIG and hearth-warming story. The card said that my friends opened a bank-account for me and that they are putting money on it on a monthly basis to help me pay for my treatment ♡  ♡  ♡

They also did send a mail to a lot of people with my story in it and a lot of people added money to that bank-account too. So my wonderful friends helped me to pay for my treatment the last 3 months! How amazing is that!! This really really helps me, because without it I could not pay for it anymore!

For this update I think it is important to realize for people around me that there is no quick fix for Lyme disease and it's co-infections. First it is a search for answers to the question why you're sick all the time, than you have that answer. it is Lyme disease and (most likely) co-infections and then you have to search for a good doctor. And than you have to search for a treatment, with your doctor, because there is no 'one size fits all' treatment. So there's a lot of searching as you see and years pass by while you are searching. And I guess, when someone is having Lyme disease for years without knowing, you don't get rid of it quickly.

For someone who doesn't have this disease or who doesn't know someone battling this, I guess it is really hard to understand this disease and it's treatment (trial and error, one step forward, two/three steps back). And it is hard to understand how someones life changes, how their priorities change, how their personality's change. It is hard for myself to understand it, so I can't imagine how it is for an outsider to get it. Also I find it very difficult to explain it to people. I always try, but after half an hour of talking with someone my brain feels like soup and then I can't explain things how I want it, in my head I know what I want to say, but the words won't come out of my mouth. Pretty annoying..!

It's really difficult to explain how this disease affects me. Because it is different almost every week. I never know how I will feel tomorrow, or even how I will feel at the end of the day. (I know that nobody knows that, but I hope you know what I'm trying to say). One moment I can have fun with friends but half an hour later my brain feels like soup and I can't understand what their talking about and I'm starting to feel dizzy and it feels like my brain stopped working or something.

Or one day I wake up and I am pain-free so I plan to go to the woods with my dog later that day. But when it's afternoon my joints and feet starting to hurt very badly and my legs feel heavy, so the trip to the woods turns into a walk with my dog in the neighborhood. Or I'll call someone to take my dog on a nice walk with them so I can lie down a bit so I will be able to make dinner for myself in the evening. So I learned to live day by day and don't plan too much ahead.

I'm not able to see my friends as much as I want to, because I'm exhausted and have energy for one or two hours a day, if I'm lucky. So when I get there, I'm already tired and have trouble to just have a normal conversation. Sometimes I just go and ignore how I'm feeling and just have some fun and feel a little bit like a normal human being, but than I have to pay for that the following days/week.

But Lyme disease affects me in other ways too. It is not only that you have to live with symptoms that change everyday and during every day. It is also a fight with insurance companies, with benefit agencies etc. It affects every aspect of my life and it is very difficult to explain it because I don't want to overwhelm people with it and also I haven't figured it all out for myself, because I am still in the middle of it.

I'm 33 weeks into treatment now. Still with the same doctor. But, we didn't find a cure for me yet. Also because there is no cure for Lyme disease and everyone needs to search for something that works for them, because everyone's different and everyone's having other co-infections with Lyme disease. So it is a really difficult thing to treat!

I'm still taking 5 different herbs and a lot of supplements (minerals, vitamins etc.) and also classic homeopathic remedies, but I am having difficulties getting on the right dosages, especially with the herbs. Those herbs are tinctures and you have to take drops from that tincture. You start with one drop, for example, three times a day and then you build it up to, for example, 20 drops three times a day. There is my problem, each time I add a drop, with whatever herb, I get sicker. And my body needs a lot of time to adjust to the new dosage. So I'm still not on the right dosages after 33 weeks. But I am still thinking of those herbs as very powerful herbs and I know those herbs helped a lot of people, so I won't give up easily!

I hope the herbs are going to help me soon too, so I can start to feel more human again, because now I do not. Sometimes I think: 'It is not possible to feel any worse than this', but then I wake up the next day feeling a lot worse. And everytime I demand too much of myself my body won't recover from it. When I demanded too much of myself at first, I needed 3 or 4 days to recover. Now I don't recover at all, so now I adjust to the 'new level' of feeling like shit.

They also found another co-infections in my blood; Ehrlichiosis and the many more listed below. That is why I started to call it a zoo in my body, because the list is getting so long ;-)

  • Borrelia (the parasite that causes Lyme disease)
  • Babesia (a malaria like parasite that infects the red blood cells)
  • Bartonella (a parasite that infects the white blood cells)
  • Ehrlichia (a parasite that infects the white blood cells also)
  • Coxiella Burnetii (the bacteria that causes Q-fever)
  • Eppstein barr virus
  • Cytomegalovirus

So there are a lot of parasites and viruses in the 'zoo' and I think there you have another answer to the question: “Why it's taking so long before you feel any better?” (The first answer was that there is no cure yet.)

So I am still searching. Searching for a cure, searching how to get through the day without asking too much of myself, searching how to control 'the zoo' instead of 'the zoo' controlling me...

But I'm still having faith that I will feel better one day and that I will be able to live my life again!


Here you can find Esther's original blogpost

Read 3959 times Last modified on Monday, 30 November 2015 19:36

Huib Kraaijeveld

Initiator On Lyme Foundation