New Here - Lyme and Bartonella

BlazerGermany said...
Hi Guys, I'm Blazer from Germany and I decided to reach out to your US-Forum because it seems the treatment of Bartonella is much better known in the US than it is in Germany. Chronic Bartonella is barely known here, and if - it is only treated by few Lyme Experts as a Co-Infection.

Basically no doctor knows about it - but here i am.

2 Years ago my ride started, when I thought i was fainting and went to the ER. They checked my CRP levels and they were through the roof at 115mg/l - it might shock you but they did absolutely no further testing and just waited for the CRP to come down - wich it did. 4 Days in and it was at somewhat 90 mg/l so they decided to kick me out (german hospitals are all trash)

My symptoms stayed and my doctors checked me for basically everything accept lyme and bartonella. MRI, X-rays, gastroscopy, heart ultrasound, and whatnot....

Only after my left arm started to feel cold and numb, they put me back into the hospital (after 2 years) and they found out I have Lyme. Well actually I don't have Lyme - I have borrelioses, because Lyme is limited to b. burgdorferi, and I have b. afzelii - but its basically the brother of lyme.

They tried to treat me with 21 days of Doxycycline wich first turned out to be good (massive improvements, etc)
but it snapped back totally after 14 days of not taking it.

Now I am on the ride reaching out to a well known lyme specialist here in germany (appointment is in 10 days).
To keep myself alive i throw in 200mg of Doxy daily and Artemesia. It keeps the heart issues, the low blood pressure and the big headaches away but it is by far not curing anything.

I look forward for a minocyclin + clarithromycin combined therapy.

Best wishes from germany, where your healthcare is free - unless you actually have a chronic illness then your government will somehow make you pay everything.

yay!

I’m on my way out - but wanted to welcome to the forum.
I believe there are a few options in Germany.
There is a lab that tests for Lyme - Armin lab

We have members from Europe will be able to
Provide with more info.

There is a clinic as well:
https://germanlymeclinic.com/

Hi Blazer - and welcome

we do have some international members - i am in the UK for instance

we have similar issues here with GP's being poorly educated on lyme and not at all on bartonella.

its a bizarre situation - they recognise Lyme is a serious disease - but believe its easy to diagnose and easy to treat.
but if you then ask them what happens to people who contract it and are not diagnosed or treated for years - they have no answer - its like you become invisible to them, or must have some other illness.

anyway Armin lab is about the best lab in Europe from my reading around the options

i was tested there using the Tick plex test from Finland

my test was positive for Borrelia garinii - the other common European species

i wouldn't get too hung up on the name - apparently there are now something like 20 species of borrelia now that are known to cause Lyme disease - including the 3 most common types in Europe
B. Garinii, B, Alfzelii and B. burgdorferi. if they want to simply call this borreliosis - i don't think it will change the treatment direction - and might actually help avoid some of the stigma attached to Lyme disease

full list of lyme disease causing borrelia species here

B. mayonii

B. americana Rudenko et al. 2010

B. lanei

B. turdi

B. tanukii ***unaga et al. 1997

B. californiensis

B. kurtenbachii Margos et al. 2013

B. yangtzensis

B. valaisiana

B. afzelii

B. spielmanii

B. maritima

B. lusitaniae Le Fleche et al. 1997

B. garinii
B. g. garinii Baranton et al. 1992

"B. g. bavariensis" (Margos et al. 2013)

B. japonica Kawabata et al. 1994

B. sinica Masuzawa et al. 2001

B. burgdorferi

B. bissettii

B. carolinensis Rudenko et al. 2011


sometimes people are seronegative before treatment with abx then convert to seropositive for lyme during treatment - but i dont know if this occurs with the LTT
Armin can advise on the impact doxy might have on the LTT

i think Armin also have links to doctors that treat Lyme in Germany - possibly even members of ILADS - but they may not advertise these - due to the whole Lyme controversy - but would be worth asking them on the phone

ref bartonella - i have this also - see my blood slides in the link in my signature for how i was able to definitively diagnose this using an old and well recognised blood smear technique - but my blood tests were negative via Armin. it is generally harder to detect than Lyme.

good luck on the 31st

all the best!

Update: I was at the appointment, and they gave me 200mg of minocyclin instead of the doxy + artemesia annua

I will now be on that protocol for 4 weeks. Then i will Go Off antibiotics for 4 weeks to do an LTT

Hopefully the mino works better than doxy..

She didnt want to give me a dual treatment without the LTT test sadly...

So I might try the oregano oil or allicin now as she wont prescribe me rifampin or azithromycin unless the test shows bartonella :/

But thanks for the mentions very helpful

PS

best primer on bartonella out there - its by two of the worlds leading experts ( one is a researcher in Bart for 40 years - and one is yale or harvard medical school trained physician who treats it)
well worth a watch

https://www.youtube.com/watch?v=njywmmpjiku