Lyme and Choices

There are days when my brain works better, and thus my mind works better. I start to think, trying to understand my situation, my day to day life or how I fit into the life of others. The problem with such questions, with just a basic ability to construct a logic argument in an attempt to figure things out, is that you cannot arrive very far in your understanding. My mind stops in the middle of several premises and then I ask myself ”what am I thinking about?” Or things become blurry and there’s this nothingness in my conscious thinking that I cannot escape.

These days I’m thinking about how I would not be alive if it weren’t for V., because I cannot work to have even the basic necessities covered, let alone to cover the cost of my treatment. And when I say I cannot work, it’s not that I’m picky about jobs – honestly, I am not well enough to even be a videochat model, which is by far the easiest job in the world. And why I could not do it? Because it involves talking with other people and being physically active, and I don’t have the cognitive or the physical abilities to do either. Even talking to my doctor and explaining my symptoms or asking for tests is an area where I tend to fail most of the times – which is why, for appointments where there are several things to discuss with my doctor, I ask V. to come with me and do the talking. Otherwise, I forget what I have to talk about, I don’t ask questions (because no question arises in my head) regarding doctor’s indications and so on. I’m like a child when it comes to face to face interactions.

I remember one day, there were two men at our door and they asked to come in to check the air conditioning in the apartment. I listened to them but my mind was not able to process any kind of response. A few seconds passed, I looked at them while I was trying to come up with something to do or say, I realized that the more time passes, the more awkward it gets so I did what any child would do – call their parents to deal with the unexpected situation. I called V. and, out of curiosity, I listened to the conversation so as I would know what to do or say in the future. And such situations are the new normal for me, whenever there’s something new, unexpected – be it a conversation with my doctor, with the nurses or other people.

But this post was supposed to be about Lyme and choices, specifically, the fact that V. doesn’t really have a choice to be with me or not. And I feel guilty for it, I never wanted to be the one to put someone in this position. I don’t know how to solve this predicament. Do I have a choice that will not affect him? Does he have a choice that will not affect him? What do we know? I don’t know. I’m doing my best to keep the guilty feeling at bay and just take every day at a time.

Symptoms Diary


I’ve been feeling off, out of sorts, since the last time I wrote here. My social interactions are the ones that are most affected by this.

Sleep has been consistently on a positive trend, but with the usual ups and downs. I take Griffonia Simplicifolia (2 cps) from here and it’s a good product. I also take GABA from NowFoods and seems like it does something well. I stopped using the essential oils.

Two days ago I messed with my herbal antibiotics intake. I usually take Artemisinin 400 mg in the morning, but that day I decided to take another 400 mg in the evening, thinking that my body will tolerate it well since I’ve been taking it for 6 months. I wasn’t very sure that it actually works that well — I was proven wrong by several hours of herxing and insomnia during the night, headache during the day, etc. I took some Sarsaparilla but I guess I should have taken more, considering the intensity of the herx.

Otherwise, I have headaches pretty much daily,  but it’s ok. It is OK because the herbal antibiotics are helping my brain heal. How do I know it? I feel coolness inside my head, in various areas — the temporal lobes, the frontal lobe or in the center of my brain (the bridge between the hemispheres). When I was taking Ceftriaxone i.v. I would feel the same thing, but 100 times less widespread or intense. This coolness is like a sigh of relief from my body, sort of ‘finally things are on the right track’. I believe it’s about my arteries/veins/capillaires and the fact that there’s more blood flow in those areas. Same coolness happened when I had Magnesium i.v., it was in all my body. Magnesium is known to dilate blood vessels and hence the coolness felt when it happens.

Yesterday I had a higher degree of empathy for V.  and for other people. The degree of empathy one is capable of is the measure of one’s understanding, and implicitly, of one’s cognitive and intellectual abilities.

Going out in the winter’s cold doesn’t work for me — I realized this long ago but was unsure until last week. Everytime I went out in the cold, I had pain in my right hand and thousands of needles in my finger joints AND the more I continued to go out, the more my symptoms worsened towards Sjorgen’s or Sicca syndrome (dry eyes, dry mouth, dry everything). I spent last week indoors and the pain in my right hand subsided, my eyes and my mouth were no longer dry. I could actually do a massage — which I haven’t been able to do for 1-2 months due to the right hand pain.

I know I make grammar mistakes on this blog, I see them, but I don’t have the impulse or the slightest desire to correct them.


The sleep has been with ups and downs.

I’ve been dealing with an annoying eye problem — it feels like I have sand in my right eye, it is very dry and I have pain when I look to the left/right/up. Most likely it’s optic neuritis, a mild version of it. I should do some research and find out why, but I had some minor brain zapping last night and I’m off like in a parallel universe. I should probably go to see my doctor if it doesn’t get better.

Minor zappings are the kind that don’t wake me up and don’t feel like a thunderbolt. The minor ones feel like: a thin sword of zapping from left to right or like a wide leaf of buzzing from left to right. The latter was last night. I woke up exhausted, with a headache and being off. Even though I slept 8 hours + another 2 hours.


The last few days reminded me what sleep can do.

Three nights ago, I slept like a normal human being, a total of 7 hours and I woke up only once to go to the toilet. The next morning, I was able to cook, clean the appartment, read some things, write some things, have a conversation with my family. The most important thing, I was able to pass the vacuum cleaner on the carpet. The last time I was able to do that without a complete physical crash was in 2014. The last time I had enough strength in my arms to do it was mid-2016. Until three days ago, I simply could not vacuum the entire appartment. But that day I knew I could — it’s hard to explain how I ‘knew’. But I knew I could do it, just like I know everyday how much my body can handle.

Two nights ago, I slept only 4.5 hours and that night I learned the answer to ‘why do I wake up in the middle of the night with a rapid heartbeat?’. After I woke up, there was rapid heartbeat. After another hour, I started to have some nausea, then progressively diziness and some other major herxing symptoms.

And it made sense — the day before, in the morning, I used my antibacterial essential oils mix (clove, cinnamon, thyme, citrus, rosemary — it’s one of the best protocols, but I don’t remember where I read about it) on my neck, like an idiot. I used it before on my legs/abdomen, but never on my neck, because I know that the skin on the neck is one of  the most permeable. Even during the day, I had short, strong bouts of diziness, some degree of nausea, but nothing serious.

So, in the middle of the long white night, when it was about 5:40 a.m., I remembered I didn’t take my Kapillar supplement (dihydroquercetin extract form a Siberian tree) that day, which helps the lymphatic system to get rid of the toxins. The thought appeared out of nowhere, like a sudden realization. I got up, took it, and in 40 minutes, I started to get better. I even dozed off several times that morning.

The day following the 4.5 hours sleep night, I was in bed. I could not do anything physical without nausea and increased heart rate. I told V.that I was at the opposite of the day before that. But, one point he made ‘If you were at the opposite, you would not have empathy’. Point taken. By the end of the day, I started have strong POTS symptoms — while standing to take my supplements in the evening, my pulse was about 150-160 BPM, I ignored it thinking it will just get better on its own like so many times before. Then I started having diarrhea, pulse was not dropping under 140 BPM even if I was sitting. Only when I lied down in bed it dropped to 90-100 BPM. I decided I had to go to sleep ASAP, my body was crashing. At least, that night I slept again a total of 8 hours.

I noticed that the trend of bad nights vs. good nights (in terms of sleep) has changed since I started using frankincense and myrrh oil. And the effect of this is more profound than the effect of antibiotics. V. and I both agree that if I could only sleep well for 6 months, every night, then I would beat the disease.


I realized how much I learn from the trial and error approach to handling my disease. For the past 3-4 weeks, I only used Frankincense oil to reduce inflammation, thinking that it would be enough. It seemed to me that myrrh didn’t play much of a role, since it was so slow acting.

But I added Myrrh oil back this week in my nightly oil routine. It’s been officially 7 nights in a row with almost sleeping well — only one night with 5.5 hours of sleep and the rest of them with 7-7.5 hours of sleep per night without insomnia. Maybe 30 minutes/1 hour insomnia per night, due to the rapid heartbeat thing. I still wake up 3-4 times a night (much better than every hour as in the past), but this is a normal that makes wonders.

Last night I woke up after 4 hours of sleep, I didn’t have a rapid heart rate, just needed to go to the toilet. After coming back, I put a little bit more Inflammation oil mix on my knees and on my temples, but I couldn’t sleep. My heart was beating fast, no matter my slow breathing and other techniques that are said to work. At some point, I changed my position to lyind down on the left side, the left side of my body completely sinking in the mattress and in 1 minute my heart rate went down. In 5 minutes I was asleep. That was only one hour of insomnia.

Sometimes I wonder how much my symptoms are caused by Lyme and how much by the  constant lack of sleep, since I chose NOT to take the horrible standard medication for the last 2.5 years. I say this because yesterday, I had the energy to: stay up and move around the kitchen all day long, talk with my mother and sister (without forgetting words, without stopping in the middle of the sentence not knowing what I was saying, etc.), clean the kitchen a little bit, play some Zelda AND spend some time with V. In the evening. Sure, I feel a little tired today, but I did not crash like in the past, where it would take me 1-2 weeks to recover to some normal energy levels.


It’s been a weird week. Just when I thought my sleep improvement formula was perfect, my sleep started to be hectic again. I have insomnia every night, 1 to 3 hours. Now that inflammation is fixed, the room is cool, mood is OK/stable (meaning no funny balance of the neurotransmitters), I wake up with my heart beating fast (around 85 BPM) and pounding, from the deepest sleep. I’m wondering if my brain decides to wake up because it wants me to stay awake in case things get worse or my body wakes up because the heart rate is that of someone walking, not sleeping.

Last night, after 3 hours of staying awake, starting to be hot, heart rate and the pounding werent’t getting any lesser, I put a drop of Lavender oil on my neck. In 20 minutes I was fast asleep, but (there’s always a but) I had weird dreams — lucid dreams where I was just sort of flying/falling around and through various dream landscapes, including falling through a giant page of a book. Then, at least  4-5 times, I felt while sleeping an awful and very intense burning through my entire brain, that lasted more than just a second. Again, I wonder if my brain wants to stay awake at night in order to avoid such things occurring.

The other night I had 3 x 30 minutes insomnias, which was rather OK, but the third time I woke up hearing a heavy wind-like sound. I was alert, thought I didn’t want to wake up completely, just wondering where did that sound might have come from. After 2-3 seconds, the same heavy ‘whoosh’ going from the left side of my brain to the right side, like a bundle of chords of electricity. I was like ‘oh, this is what I heard’. Then, out of the blue, I hear the cry of a baby. I’m thinking ‘Who goes out with a baby at this hour in the night?!?’. The appartment is on the groundfloor, the window is open and right next to the entrance in the building, so it would be possible to hear that, even through earplugs. I waited, to hear steps outside or the entrance door opening…but nothing. The baby was crying and after a few seconds I realized ‘Oh, I think this is me hearing things. I should snap out of it.’ And I did, I opened my eyes and got up, went to the window and of course it was complete and utter silence.

This isn’t the first time I hear stuff that isn’t real. So far, I heard a song, I heard V. talking on the phone and packing things in paper bags, I heard a male teaching Spanish in a room full of kids — he was teaching them to count and he would say ‘uno’ and the kids would repeat after him…I wonder how many Lymies out there have auditory hallucinations.


Sleep has improved, since I’ve been sleeping with the window open all night long.

Mood has been pretty stable, all things considered.

Foggy mind. Chest tightness is less pronounced, since the sleep has improved. Also, almost no feeling hot in the last few days.

Wish I could have more conversations with people, but the fogginess makes it very difficult – I don’t know what to say, staying focused is almost impossible…

I gave up the structured way of presenting my symptoms, too much effort in categorizing the information on my symptoms.


The last few days continued in the same fashion until yesterday.

Yesterday, everything started to be better. I even managed to go out, have lunch with V. in the city.

I woke up without the bad thoughts and memories. Upon waking up, I just noticed my brain was working in a different way.

Sleep is still chaotic, but that is because I get too hot at night. In Germany, you can’t choose the temperature at night, so that’s what makes me wake up and stay awake at night.

The rest of the physical symptoms stay the same with added nausea.


Sleep: 6h

Mood: Identical. I can hide it better though.

Physical symptoms: Exhaustion, chest tightness with the slightest effort and feeling hot. Still, I did a 40 minutest walk around my neighborhood and cooked something. I woke up with my head as if it were on fire.

Neuro symptoms: The same.


Sleep: 7h

Mood: Mind stuck in the worse days of my last 2 years which were (still are) the worse of my entire life. I cried for an hour after waking up and some more during the day. I used to be the best at compartmentalizing and telling my mind what to do – now, whenever I have some bad thoughts, I am stuck and I need to wait until the wiring of my head works better. Nothing helps.

Physical symptoms: Constant headache since I woke up. The slightest movements in a hurry make me feel hot and exhausted. Since I stopped Ceftriaxone, my energy levels diminished greatly. I have chest pain and chest tightness after walking outside for 40 minutes. Physical movement means increased hip and knee pain – the cold may play a role too. Feeling exhausted all day long. Still: I cooked a nice meal which took at least 1.5 hours. Walked outside for 40 minutes. Whatever my mood, I will not allow it to interfere with the must-do things.

Neuro symptoms: Inability to focus, to express myself while talking, to follow the sotryline in the Russian adaptation of Dexter, ”The Method”. A 30-40 minutes talk doubled the intensity of my headache for the second half of the day. During the talk, I could hardly keep my eyes focused on an object, the twitching was hard to control.


I dreamed I was extremely tired after cleaning up an entire house and then I had to take the bus to get a Ceftriaxone infusion from my current MD.

I do have to go today to my MD for the Ceftriaxone infusion. The 700 m in total walk to and from the subway station (combined with several flights of stairs) haunt me in my sleep apparently.