Posted 4/2/2023 7:10 PM (GMT 0)
It’ll be pretty long post - I tried to keep it as short as possible but it’s almost 2 years of medical history.
I had initial tick bite in August 2020 with developed erythema, was treated with 200 mg Doxycyline for 10 days - at the time I was 17 years old with perfect health and no symptoms.
6 months later from day to day I started to have terrifying symptoms - cognitive impairment (extreme brain fog) and constant fatigue.
It was so severe that when I had to send 5 emails I stared on the laptop for 1 h without ability to write anything. Then I layed down on bed (it was 1pm) and layed all day long.
I almost imidatelly thought it was Lyme, so I went throught various standard doctors - they didn’t helped me at all and they said it’s not Lyme, I’m young and it’s most likely stress. That’s pretty common in Lyme communities, especially in my country so I don’t have to explain it in depth here.
So I stayed in that horrible state for 6 months looking for answers and losing hope - I couldn’t work, learn or do anything. In the meantime of that 6 months my mother gave me COVID infection which worsed my Lyme symptoms, gave me flu-like state for 2 weeks and vanished my smell and taste for about 2 months - this is important for later of that post.
Then, in February 2022 I found out about LLMDs and found out LLMD with 20 years of experience in treating Lyme.
On appointment he said that I have severe neurolyme, and my case is characteristic - I developed neurological symptoms 6 months after initial tick bite.
We ordered Lyme and coinfections panel and it turned out I’ve confirmed Lyme and Bartonella.
He reccomended starting IV Ceftriaxione with Tinidazole for 10 weeks (2-3 months) as it’s most effective way to clear neuro Lyme. I started treatment and fortunately I started to notice improvements within first days - my sleep quality improved, my insomnia started to dissapear. Also my smell and taste went back to 100% which was interesting as it’s COVID symptom.
Each week I started to regain my cognitive function - like first 2 weeks 30% better, 4 weeks 50% etc In 8 week I got huge worsening with fever and flu like symptoms - It was Hexheimer reaction which was a good sign.
In 9 week I felt cured - all my symptoms were gone, and I regained my full 100% cognitive function. I stayed on oral antibiotics and antifungals (Candida prevention) for 4 more weeks to prevent Relapse.
Then LLMD allowed me to stop diet, and I started to eat normal people food - pizzas, cakes, candies.
And then my health sudennly crushed - after 1 month of beeing healthy.
I started to feel some weird, new symptoms - face swelling, extreme diziness and behind eye extreme pulsing headache - it felt like stroke. More bad, my cognitive decline started to return and went back to even worse state than before treatment after 1 or 2 days - In short I went back from 100% to 10% within few days.
I went to ER imidatelly as it feeled as stroke - all tests, CT went fine with slightly increased CRP - They dissarged me from ER saying it’s stress and I need to calm down….
I went back to my LLMD - he said that unfortunately I relapsed in 2 reasons:
First it was rapid Candida growth as I eated too much sugar after 3 months of antibiotics - I should wait 3 months after stoping therapy. Secoundly Candida caused immunosupression which activated Bartonella - that’s what caused severe headache and stroke like feeling.
Now I think that immunosupression also caused reactivation of long covid as I lost smell and taste alongside with my cognition.
LLMD said that I need to return to treatment, but relapses are usually much quicker to resolve and I should back in shape within few weeks.
At first he requested 30 days of antifungals to treat Candida. After 30 days we started Bartonella treatment with Bactrim and Doxycyline. Bartonella typical symptoms (derealizations, burning feets etc) dissapeared gradually, but the most important cognitive symptoms stayed without progress.
I was disapointed as IV antibiotics helped me almost imidatelly and here I stayed at 10% for 2 months. I wanted to back to shape ASAP as it was mid summer so I requested my doctor to back to IV Ceftriaxonr - He was very doubtful and said it’s most likely not the case, but after my 2 requests he gave in, and agreed.
I started IV Ceftriaxone again, but my cognitive symptoms were not improving as before so doctor probably was right. However I noticed improved sleep and much improved music sensivity, which was weird, because it had some effect / reaction, but different than at first. Also what is important on this post my smell and taste went back to 100% again.
After 3 weeks of IV Ceftriaxone without much effects I decided to stop it. Went back to Doctor, and he put me back on Bactrim as before for Bartonella.
And here something veryy weird happened - almost imidattely, 15 minutes after taking Bactrim I started to regain about 60% of my cognitive function. Next day 80%. Next day 100%. - It was very weird as same meds did nothing month earlier when I took them for 30 days straight - And now they worked almost imidatelly!
So why it worked now?
My theory is that I found that IV Ceftriaxone acts as nervous system cleanser on some degree and can help with COVID.
So it looks like I have Long Covid, regarding my previous infection which caused big part of my Cognitive Decline alongside with Bartonella, so Covid blocked further recovery as Bartonella antibiotics worked on Bartonella only.
After IV antibiotics I ,,blocked” COVID, and I started to feel Bactrim effects imidatelly as nothing more was holding.
Unfortunately it’s not over.
After I went back to 100% of my cognitive abilities in matter of few days I stayed in that state for 2 months, started to live again and continued Bartonella treatment as some symptoms stayed (burning soles etc) so I didn’t wanted to screw up and relapse.
After that 2 months I got infected with some virus which caused extreme pancreas pain, cough and mild fever.
I went to internists - CRP was elevated which proved virus, but pancreas enzymes and USG were normal so it was only virus.
Stomach issues resolved after 5 days, but my cognitive decline started to back after virus resolved and after 1-2 days I went from 100% to 10% again.
My hypothesis is that stomach Viral infection messed up with my immune system and activated Long Covid again, which caused Cognitive Decline - That was in November 2022 - almost 5 months ago.
During that 5 months till now I’m still treating Bartonella with LLMD but my progress is almost 0%. We switched to Rifampicin, but Cognitive Decline didn’t improved, maybe 10% at best days.
I still have Bartonella for 100% as I’m still facing die off reactions after taking antibiotics. I also tried stoping antibiotics as LLMD wanted to check and after 5 days (literally Rifampicin half life) my Bartonella symptoms back and became 10x as severe - extreme pulsing headache, eye problems etc
However as I said my cognitive impairment didn’t improved much after 5 months, which is making me miserable - in that state I can’t work, continue eductation (I should be in college now) or live normally at all.
In that case I think that my treatment is not properly targeted and Bartonella is not causing all of my problems, and I’m thinking that Long Covid is playing a big role and making me unable to recover - my smell and taste is at maybe 20% so it’s one of the proves.
Also I found out that heavy Cognitive Impairment is rare in Lyme and coinfections and is more often with Long Covid.
However both of these contidions are causing immune system issues and having them together is a big mess.
Please let me know your opinions and sugestions what should I do - I’m miserable as my antibiotic treatment is not working since 5 months and I can’t do anything with that state - work, continue education or even have girlfriend.
My hypothesis is: I have Bartonella infection with Long Covid, which is blocking my treatment and causing stubborn cognitive decline.
It seems I need to treat / get Long Covid under control at first to finally get over with that fvcking cognitive decline, and get my life back.
Current treatment:
Rifampicin, Doxycyline and Azithromycin.
Fluconazole and Nystatin 2x week
Below I’m pointing my most important symptoms and diagnosis to make things clear:
1. Huge cognitive decline
It feels like I lost 90% of my brain abilities and intelligence. Things that were easy for me seems like nightmare. Everything is taking 10x more time for me - sending simple mail can take 20 minutes. In that state I can’t work, or continue educatuon and all I can do is laying on bed looking on ceiling.
2. Short term memory loss
I can go to fridge for oat milk, open fridge and forget what I wanted.
3. Poor word vocabulary
I always been perceived as inteligent and had rich vocabulary (in my laungage) Now when I talk I can’t find words and I sound very dumb sometimes.
4. Weird word perception / Doesn’t feeling vibes
That is hard to explain. It’s like my life before those illnesses was so colorful like Hollywood movie and I could feel all differently with so much imagination.
When I went to particular place like gym, beach or airport I instantly felt that place vibe, and atmosphere and had thousands of thoughts about that place.
Now everything seems blank and boring, everything where I’d go I’d feel the same - no feeling, no emotions.
If you’d take me to Marseille I’d feel same like if I’d go to grocery store for chicken.
Then, before that illnesses I’d be so excited with all emotions and that place beauty.
That symptom also confirms Long Covid as it’s not happening with Lyme as I researched throught various threads.
5. Unable to focus / jittery
It’s weird, but I can’t focus on anything for longer than 10 secounds.
It’s like I’d drink 3 cans of Red Bull after not sleeping 2 days - I don’t have energy, but only feel something like side effects of drinking too much caffeine (mostly I don’t consume caffeine at all now)
That symptom makes me almost unable to do anything - I can’t watch Netflix, or play Fortnite because after few minutes I fell ,,enough” and need to go somewhere else.
6. Fatigue
It varies - sometimes it’s good, sometimes it’s bad, sometimes it’s extreme bad that I can’t go out of the bed.
7. Smell and taste loss
about 20-30% of what it was before.
8. Tinitus / sometimes headache
My confirmed diagnosis:
1. Late stage Lyme Disease / Bartonella
causing about 40% of symptoms / very similar to Long Covid
2. Candida
It’s almost impossible to not develop Candida issues during long antibiotic treatment.
I had some bad flarups throught my treatment, but I’m keeping it mostly under control throught taking preventing antifungals and strict diet.
Causing 10% of symptoms - fatigue, stronger MCAS reactions
3. Long Covid
I think it’s causing 60% of symptoms - cognitive decline, immune supression and tase and smell loss.
4. MCAS (most likely)
Appears after eating anything possible alergic.
Causes bad appearance changes - puffy, red, flushed face, swollen body, very swollen hands (like 2x it’s size) and I look generally like different person - 10x worse and 10 years older.
If I’m eating very very strict diet, especially fasting all above symptoms resolved.
However eating anything ,,possible bad” causes almost imidatte flare up, and I can’t look at myself in mirror.
I’m so sensitive that even pinch of curry powder is causing that imidatte flare up