Update: MSUD or neuro Lyme?

I’ve been convinced for the past year that I have a problem with ammonia elimination pathways, which are mostly included by urea cycle disorders.

I noticed an improvement of my symptoms while taking a certain tincture that has ammonia neutralizing effects, when I started taking it sometime in March 2019. This made me even more convinced at the time that I was on the right path to cure myself of my headache.

I noticed the biggest improvement of my constant headache and neurological symptoms (gait issues and muscle tension) for the first time in April 2019, when I would eat only veggies or rice with veggies in the morning. I did it to help my sister eat better as we wore both tracking our food intake via an app. She would eat fruits in the morning, and I would eat veggies. The result was that for the first half of the day I would be mostly free of my complex migraine symptoms. My symptoms would get worse after lunch, when I would eat some goat cheese with a salad. The full on disabling headache would come only in the evening, after dinner. At dinner I would eat a lot meat in order to reach the target of 45 g of protein per day. And so I would be miserable after 7 p.m.

For all these variations in my symptoms I had perfectly plausible explanations: the tincture against ammonia was working, but my being active during the day was increasing these levels and the tincture was not enough; I was better half a day because I bought some very expensive migraine glasses that filter the blue and green lights; I was suffering terrible in the evening because of all the physical and cognitive stress that build up during the day. Physical activity increases ammonia and glutamate levels , and inflammation in the body. Migraine is a matter of glutamate + inflammation in the brain.

The list of perfectly plausible explanations was very long and it made sense. I was testing these various hypothesis and was also thinking about my protein intake, but didn’t go as far as testing my ammonia levels or amino acids in blood.

That was until November 2019, when one morning I had nothing left to eat but some beef steak. I ate it. In an hour or so, the headache and complex aura symptoms hit me the hardest. I couldn’t believe it. It was the first time since April that I ate in the morning my usual dinner meal. Next day I tried again, to see if the same thing happened. It did. I experimented that first week every day. Then I stopped eating meat for the next two weeks. I felt like myself more often (improvement of depersonalization symptoms).

Then it was clear : high protein intake was the cause of my migraines and my neurological symptoms. So, I was 90% sure that I had an urea cycle disorder that involves ammonia buildup. I went to a lab to get tested and paid for the tests out of pocket. All levels came back negative, but this is common in mild UCDs (urea cycle disorders).

Why my focus on UCD? When you search online for protein intake and neurological symptoms, this is the first thing that pops up. I even read this paper on UCDs and differential diagnosis. It mentioned several other possible diseases, I checked out symptoms for most of them and it didn’t seem to be a fit for any of them. It’s clear that I don’t have any medical training. I didn’t have any idea that UCDs are a part of a group of genetic diseases that are called metabolic disorders.

Sometime in January 2020, while researching UCDs, I stumbled upon an article that mentioned UCDs in the context of the many known metabolic disorders. Among the symptoms described for pretty much every metabolic disorder, I came across “sweet smelling urine” or maple syrup like smell in urine, earwax or sweat. That’s when it hit me.

The first time I noticed a maple syrup like smell in my urine was in 2018, right around the time I had my severe flu like symptoms/sepsis-like symptoms (never had cold and clammy skin before during a flu episode, or actually thinking that I might die from it – a thought that had no fear behind it, more like a realization). This smell comes and go, lasting 1 day most of the time. It is preceded by a few days of a fruity smell in my urine.

I also remembered the nutty sweet smell of my earwax that would just come and go, noticed for the first time in the spring of 2016. Probably it happened ever since but I stopped paying attention to it. After all, I had bigger issues- terrible constant headache, cognitive issues, horrible chronic fatigue. Who would think that a nice smell of the earwax might mean something? I just thought “what a funny thing!”.

I am currently waiting to find a doctor who can help me send a blood sample to a genetic lab.

I just read today about another person who has Lyme symptoms (flu-like symptoms with fatigue) only 2-3 days per month and otherwise she is feeling good all the time. After a year or so of antibiotic treatments. I read several other updates from people with Lyme and, when someone is at this stage in their healing, they already have their life back.

I am at this point too in my Lyme journey, since September 2018. Only 2-3 days per month with flu-like symptoms, like clockwork. But I am not well. I live my life in bed. I still have no sense of “being myself”. I still deal with derealization. I still have difficulty walking, tense muscles everywhere, tension headache and every time I do some physical activity I am worse. I still have insomnia every night. These are typical consequences that people with MSUD have to live with after their metabolic crises.

The “migraine” is gone since I reverted back to my lifelong vegetarian diet, with very little protein (protein high in BCAA- meat and dairy and nuts) in it. At least there’s that. I’ve tried for two years to get rid of my migraine and while certain things helped, it never went away completely and reliably. So, migraine free since January 2020.

I’ll write another post with what is MSUD and how my symptoms have coincided with a metabolic crisis first in 2015 (first severe flu like episode), then in August 2016 following a strong dose of preventive antibiotic treatment, in November 2016 after a month of self imposed physical activity daily, and lastly in May 2018.

I’ll also explain how it was possible to go undiagnosed for so many years, because this is typically diagnosed in infancy or in childhood, mostly between the age of 2 and 8 years old.

What saved me and my brother has been our total rejection of meat since we were 1-2 years old and my mother started to feed us meat.

Now, the “funny” and “surprising ” story of how mother would find spoiled meat chunks in our pockets when doing the laundry or spoiled, funny smelling meat behind the furniture, makes sense.


How could I tell you, father,
That I wanted to bathe into the sun’s neverending love for all
That I wanted to die in its light a worthier death
Than a thousand warriors deaths?

I could not have known what I wanted
I could not have told you before that fire
Scorched all my other desires for darkness
For the petty life of a commonner unsatisfied with anything he has

I feared not death but living without seeing
The greatness of Helios up close
The mundane from above
The sky from deep inside the sea

Eli, Eli

Eli, Eli
j’ai crié ma nuit vers toi
mais tu m’avait deja tourne le dos
me laissant nu et cloué dans les fonds de la misère
sachant que toi, tu n’es pas là et tu n’y seras jamais

Eli, Eli,
je regarde l’ombre de ton absence qui m’emplit
et qui nourrit mon esprit avec cette seule vérité possible
des innombrables mondes réunis à l’intérieur de ce moment –
la vérité de ma solitude, la vérité de tes limites

Eli, Eli,
laisse-toi emmené par mes murmures vers l’endroit qui t’appelle
car je comprends l’émerveillement de l’arche du ciel,
je comprends vie, peur, cri et soupir,
maintenant quand tout est accomplit.

Version originale :

Eli, Eli

mi-am strigat noaptea către tine
dar tu îți întorseseși deja fața de la mine
lăsându-mă gol și pironit în ale mizeriei măruntaie
știind că tu, tu nu ești acolo și nu vei fi vreodată

Eli, Eli
privesc la umbra lipsei tale care mă umple
și îmi satură spiritul cu singurul adevăr posibil
ale nenumăratelor lumi strânse-n acest moment –
adevărul solitudinii mele, adevărul limitelor tale

Eli, Eli
lasă-mi șoapta să te poarte către locul ce te cheamă,
căci înțeleg mirarea arcului de cer,
înțeleg viață, teamă, scâncet și oftat,
acum că totul s-a sfârșit.

Treatment Update (III)

It’s been 6 months since I started the Buhner’s protocol for Lyme disease to which I added several other changes in my habits. I’ll break it up in sections.

The Herbal Antibiotics

I started with Chinese Skullcap (Scutellaria baicalensis) and with Cat’s Claw (Uncaria tomentosa).

Dosage: 200-300 mg/day of either one, because in the first four months I could not take the two in the same day – awful herxing with chest tightness, difficulty breathing and shortness of breath during the night and burning brain during the day.

Every day I had this cold flame running through my brain and giving me a specific headache and extreme mood swings – I could be totally normal one moment and then I could go to extremely angry/stressed/pissed/depressed/etc. It was like switching in a second from +100 (normal/okay mode) to -100 (the worst intensity of any negative emotions). This improved once I started on Lion’s Mane and Gotu Kola (the nerves began to heal).

It was not awful in and of itself since I’m used to such things, but I didn’t want to have to call an ambulance at night and talk to doctors and tell them I am treating with plants an “imaginary” disease (chronic Lyme). The days when I go to doctors and am told “you’re mentally ill and need to do yoga and meditation to heal” are gone.

The minimal therapeutic dose for each of the Buhner’s antibiotics is about 3 grams per day if I remember correctly. So I was taking about a tenth of that. Even inhaling some of the dust of the powders while making capsules would give me what I call “an instant herx”.

I switched to Cat’s claw and Andrographis paniculata after 2 months, because the Chinese Skullcap affected my blood pressure due to its effects on the nervous system. The same minimal dosage.

After another 2 months I managed to start rotating Japanese knotweed/Andrographis paniculata/Cat’s claw each day — 1-1-1.

The last few weeks I added Houttuynia cordata for my chronic mycoplasma infection and since then I take Japanese knotweed/Andrographis/Houttuynia with every meal (1 capsule of each, with a larger dose of Japanese knotweed since I noticed it improves the quality of my sleep – it’s also a very powerful anti-inflammatory in the brain).

The Supplements

Lion’s mane powder – 1 teaspoon, Cordyceps sinensis extract, Gotu Kola 500 mg capsules 2x/day, collagen 3x/day, reishi, maitake, shiitake, Alpha-lipoic acid, NAC, Sarsaparilla

All help with a quicker healing of the nervous system (of course, besides other benefits). Lion’s mane helped immediately with the extreme mood swings from the neurotoxins that were flooding my brain as the bacteria was dying. Gotu Kola helps with my memory – I started learning German and Spanish a month ago and my memory is better than it used to be 5-6 years ago when I started learning German for the first time. I remember that only few words stuck in my brain at that time, in a very chaotic manner, which made whatever German I learned unusable.

The Other Changes

1. Intermittent fasting – fasting for 16 hours each day, every day, eating whatever my body accepted. In the first 3 months, I could only eat goat cheese camembert and sheep cheese along with vegetable soups. Everything else gave me bloating/migraines/stomach pain/liver pain…and some other things which I don’t remember right now.

Three months ago I realized I could eat a few cherry tomatoes, a little bit of bell peppers, oats and some more. I did not eat and will never eat again: cow dairy (A1 milk) and gluten containing products.

I will probably never know the full weight of this fasting in my recovery. It has systemic benefits and I have a systemic disease. I lost 13-14 kilograms and 10-11% body fat since I started eating like this. Since the beginning of my crash in 2015 I started putting weight, craving sweets, feeling hungry ALL the time, went into full pre-diabetic mode and insulin resistance (high carb meal meant feeling extremely sleepy at work and sleeping while at home).


“The 2016 Nobel Prize for Physiology or Medicine was awarded to Japan’s Dr. Yoshinori Ohsumi for his discoveries of the underlying mechanisms of a physiological process called autophagy. […]

This is the body’s way of cleaning house. It happens during starvation, calorie restriction, and fasting. If the body fails to engage in autophagy, damaged cells and structures can accumulate dangerously. Autophagy is one method that the body uses to naturally neutralize cancer cells and degrade cells infected by harmful bacteria and viruses.”

The original article is here. This may have well been the reason why I could tolerate only such small doses of the herbal antibiotics. My body was on a bacterial/viral killing spree, without any outer help.

2. Total rest

I went against my doctor’s advice of moving one hour per day when the cold hit. Since my body’s thermostat has not been working properly since 2015, cold is something my body still cannot adapt to. Five minutes in the cold and then I would spend 4-5 hours trying to warm my body up. Also, rheumatism/Sjogren syndrome symptoms would intensify to the point where I could not use my right hand.

So I did no physical exercise, though intermittent fasting was a pretty good substitute in terms of its impact on the body. I only sat in bed and cooked a small meal every day.

Treatment Update (II)

It’s been almost 6 months since I started my Lyme treatment. I didn’t write about it more because my brain is very bad at organising and prioritizing information – a lot has happened and a lot is still happening, so what should I write about in a comprehensible mode? Today i feel like I can do a sort of summary.

I started the IV antibiotic Ceftriaxone on July 12 and it ended in the beginning of November. The reason was a ‘borderline’ EKG, which was interpreted by my family doctor as ‘increased QTc interval due to the IV antibiotic’. Although my doctor in BCA chose specifically this antibiotic because it does not affect the QT interval. A phone appointment with the BCA doctor two weeks later confirms that the QTc was not longer because of IV Ceftriaxone, but because of the herxheimer reaction – too many bacteria dying and their toxins/neurotoxins were not flushed out quick enough. A more recent EKG, after one and a half month without IV antibiotic, showed that my QTc was longer now than it was in the beginning of November – 453 vs. 451.

In November I asked my BCA doctor to switch to herbal antibiotics, at least until my QTc goes down and my doctor here can give me IV abx without worrying. My BCA doctor also told me that doctors are not familiar with what a herxheimer reaction is and explaining it to them is quite an impossible task. The way I understood it better – it’s similar to being poisoned (poisons are toxins/neurotoxins that affect the body in a number of ways). Now, that I’ve been off IV antibiotic for two months and I noticed that I am much better now than after 4 months of Ceftriaxone, I consider it a thing of the past. I decided to take my treatment in my own hands (what an improvement in the quality of my thinking!) after realising that I NEVER read any story, on any website or forum, of people who have entered a full remission after synthetic antibiotics treatment. All success stories have been from people who did a herbal antibiotics protocol, whether Buhner’s or Klinghardt’s — most of the time, after months or years of synthetic abx not doing much for them. I’m a rebel and this lady’s full recovery story stirred up something in me. That’s what I want for me.

What I didn’t tell either of the doctors was this – during the entire month of October, I’ve been taking a supplement which improves any Lyme treatment. It’s called DTC Plus. And I also added in, without permission, rosemary essential oil from time to time – this is a badass because it disrupts the communication between ALL bacteria in the body, so they cannot work as a pack to launch their next attack. Around that time I actually started having herxheimer reactions and liver pain at night. My experience with Ceftriaxone was that it gave me energy, and thanks to that energy, I could actually do the things that helped my body fight the bacterial load on its own (doing things around the house, walking every day and so on). But I don’t think it did much to kill the Lyme.

LymeSpot revised
Results from my LymeSpot revised in September

Actually, I don’t even know for sure if I’m fighting the active Borrelia infection or just a bad inflammatory response + Bartonella – they both can mess up the brain in unimaginable ways. My Lyme Elispot has been constantly showing no active fight against Borrelia, but my Bartonella Elispot showed that my body is fighting Bartonella. Anyway, this is pure speculation, based on what I’ve observed, since there’s still no test which is 100% accurate when it comes to borrelia, bartonella, babesia and other ‘obscure’ bacteria that steal the life of thousands and millions of people. We will get there surely, because it’s the disease which spreads fastest amongst all diseases and, even though big pharma cannot profit from it (synthetic abx don’t do much, so why have tons of costly research if no one will ever be able to make big money from it?!), governments will be forced to spend a lot of money on developing tests at least. Or when big pharma will find a way to have intellectual property over Mother Nature’s best treatments.

Considering that I’ve had real progress in the last two months only using herbal antibiotics and fighting inflammation with the best from Mother nature (myrrh and frankincese), I will not go back to synthetic antibiotics. Never ever had I had a herx so bad that it kept me up all night from Ceftriaxone + Mynocicline. Yet, three days ago it happened from a few drops of antibiotic essential oils rubbed on my neck. On the other hand, my BCA doctor said that there’s no standard treatment, everything is a trial and error. I will bet all the time I spend to beat the disease on the treatments that always work – the herbal antibiotics. They are powerful enough to kill the MRSA superbugs, and borrelia is not a superbug, just a slimy little thing that has had billions of years of perfecting its survival techniques.


Listen. Put your ear on the dirt
Hear the sky running through our veins:
We were found by the water
We were bound in its blue

Listen. Hear the wind of the winter
It speaks horizons in the trees:
We are born feathers
We are now leaves

Listen. Walk on the sand, on the dunes
Hear the trembling of the bedrock:
We will spring into freedom
We will become ourselves



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.