New here, need help.

Hello dear community,

I'm absolutely new to lyme disease and have some questions, I hope someone can help and I'm thanking you all in advance.

Let me start by trying to tell my health related journey over the last few months that have lead to me posting today.

- End of August 2020: got bitten by tick (firs one at age 27); my girlfriend removed it and I had no symptoms like bull's
eye/erythema migrans or anything.
- End of September 2020: Developed new and really loud tinnitus in my right ear (previously just really mild tinnitus in
my left ear), and had a tingling sensation/pain-like feeling, first in my right leg and then in my left leg as well
as right hand. I was worried and went back to Germany (was studying in UK at that time) to see doctors to have test
done etc.
- End December 2020: MRI from brain and back came back clean. Blood tests (including test for berreliosis (CLIA))
came back clean; except some of my liver enzymes were slightly increased (GOT and GPT). My GP looked at my
liver with an ultrasound device without any finding; I had checked my liver enzymes after 4 weeks again and they
came back clean
- While I was undergoing this test (November 2020 - January 2021) I was noticing some changes in my vision. It all
started with one floater which was really noticeable and increased over the period of one week to some more
floaters, mild visual snow and mild after images.
- I was under a lot of pressure during this time (was about to finish my masters degree) and since I was told that I'm
not dead sick by the doctors, I have decided to focus on my studies for that last few weeks and then see the
remaining specialists I was referred to (neurologist and ophthalmologist)
- Pretty much in that week I handed in my last piece of work for uni, my symptoms skyrocketed in their intensity. Like
the visual snow and after images became much more intensive and noticeable, trailing and BFE started, I barely
couldn't sleep, I was having panic attacks and derealisation, and overall a very bad mental and physical state.
- The first few weeks of that sudden rise in my symptoms and the newly added were pretty though with little to no
sleep, panic attacks, and a lot of crying. After that I'd say I adjusted pretty well to the new situation and health state I
was in and at least mentally I felt way better, with a lot of help from my family and friends.
- Nevertheless, my symptoms (which I will add in detail below) are slightly but gradually worsening, with some new
joining.

My symptoms (as far as I can recall all of them right now):

Neurological:
- Visual snow
- After images
- Trailing
- BFE
- Light sensitivity (was worse, improved a bit over time)
- Seeing shapes with closed eyes or when looking at white wall or similar
- My vision often seems like it has a glow on it especially in the sun or bright light conditions (everything shimmers)
- Breathing walls (especially after sports)
- Tinnitus (right side started newly)
- Sudden increased ringing and loss of hearing for short time on the right side (happens 1-2 times per week)
- Tingling in left and right leg
- Tingling in left and right hand (left one started few weeks ago; was diagnosed with carpal tunnel syndrome on both
sides by the neurologist)
- Tingling in the neck
- Muscle twitching all over the body

Gastrointestinal issues:
- Bloated belly
- Diarrhoea
- Increased urinary urgency as well as thirst

Others:
- Pain in the heart
- Heart palpitations
- Feeling my pulse pretty much everywhere in my body
- Struggle sleeping
- Pain/strange feeling in the abdominal area and right side of my chest
- Strange feeling/pain in the right side of my throat
- Pain in my liver

New symptoms started last week:
- Persisting pain in the joint of my big toe (without any trauma or similar; x-ray came back normal)
- Pain in the right side of my jaw (I barely can open my mouth to bite something sometimes)

So my questions are:

- How realistic do you guys think it is that I have all these stuff going on caused by lyme disease?
- Should I get other test have done regarding lyme disease even when the borreliosis test in November came back
negative? If yes, which test or tests?
- I've read about some tests not being accurate, but can you also have/develop lyme disease without have the bull's
eye thing?
- And finally, can someone recommend doctors that are specialised on lyme disease in Germany? I'm located in
south Germany (Stuttgart) but travel frequently to SW Germany (Trier) as well as west Germany (Cologne).

I'm glad for any advice/recommendation and sorry for the text being so long!

Welcome to the forum!

“ End of August 2020: got bitten by tick (firs one at age 27); my girlfriend removed it and I had no symptoms like bull's
eye/erythema migrans or anything. “

If you had treated the bite with a few weeks of doxycycline - you’d likely be okay now - unfortunately people don’t know that - even a General practioner wouldnt have that knowledge.

“ How realistic do you guys think it is that I have all these stuff going on caused by lyme disease? “

99.99999% it’s caused by Lyme disease - which includes coinfections - likely Bartonella and or Babesia.

A lyme literate dr is who you should see now. A LLND or LLMD

My first thought when reading your symptom list was Bartonella - derealization, panic, insomnia neurological symptoms, vision issues, twitching, and many of the other things you describe sound like a pretty classic "package" for Bart. A lot of the antibiotics prescribed for Lyme aren't fully effective for Bartonella so it's something you may want to keep in mind if you get treated for Lyme and don't get better. I hope you can find a practitioner to help you soon.