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Severe neurological visual and other abnormalities from Lyme disease and Bartonella

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Lyme Disease
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Posted 9/4/2022 4:45 PM (GMT 0)
Hi everyone, I'm hoping to find someone with my symptoms. I was bitten by a tick 1 year ago, at that time I was sick and had a weak immune system. I didn't get treatment because I didn't know anything about this disease. Many symptoms started. I have very strong HD-like vision where everything looks really too sharp, scary clear /sharp in my vision.Like watching through a very loud HD TV,visual snow,afterimages, poor night vision, all kinds of tones flashes flashes,dots and with eyes closed,Flickering vision,slow vision when moving my head,walking down the street my vision wobbles like it's out of sync with the brain. Tinnitus, dizziness, sensitivity to sound and light and more. For months I had all the tests, head MRI's, eye exams and many doctors until I finally got tested for Lyme and bartonella and they came out positive. Then they were confirmed in another laboratory and mycoplasma. For several months I have been treated with different combinations of 3 antibiotics a day, but so far I have no progress. My Lyme doctor It sounds like it takes a lot of time, but I have taken so many antibiotics and supplements for 4 months, and nothing is happening. Give me some advice, thanks.
Posted 9/4/2022 6:23 PM (GMT 0)
hello and welcome

alot of people here have bartonella as well as lyme - so you are in good company

one of the issues with these diseases is the very different manifestations of symptoms the same infection can produce in one person to the next.

its a common train of reasoning to think that if you can only find someone who had just the same symptoms as you did - and you do what they did - you will be cured.

however, as well as the symptoms being different from person to person with the same infections - the treatments that work for each person seem to be very different also.

so unfortunately even if you find a person who has had very similar symptoms to you - the treatment that worked for them may not work for you.

i don't say that to discourage you - just to try and save you valuable time in a search based on an assumption that may not hold out to be useful.
----

on a more constructive note - there are broad patterns that seem to emerge

many people with Lyme and bartonella experience only v slow response to treatment. bartonella in particular is noted for often being very hard to get moving in the right direction. it may take 3-4months on a combination to know whether it will help you or not.

bartonella is also noted for many visual related symptoms - so it may be that focussing on treating this - while keeping some agents in the protocol that are also effective for borrelia is a good way forward

many people with this combination have to experiment with different antibiotic combinations ( or other treatments ) till they find what works for them

response can be slow or partial - for example the most well known bart focussed doctor (Dr M ) treats with clarithromycin and rifampicin for 2 years or more - stepping up the dosage in the first few months

there are some newer agents being used by bart focussed doctors with some promising results
- proteolytic enzymes - used alongside antibiotics
- methylene blue added along side bart antibiotics
- Azole antifungals have been shown to have better than typical bart antibiotic effectiveness in vitro
- nitroxoline alone or in combination with antibiotics
- allicin and oil of oregano also seem to be gaining weight of empirical evidence as effective for bartonella

i had only partial response from 3-4 months of azithromycin, doxycycline and rifampicin combined - but am now moving forward slowly with herbs for bartonella, methylene blue and proteolytic enzymes.

another useful resource focussed on bartonella is "the breaking down bartonella" Facebook group
Posted 9/4/2022 6:26 PM (GMT 0)
Some doctors, like Dr J, treat babesia first and then treat Lyme and Bartonella. You could have babesia and not know it.

The reason is that he believes treatment is more effective when babesia is treated first. I believe babesia treatment is 4 months.
Posted 9/4/2022 8:42 PM (GMT 0)

WalkingbyFaith said...
Some doctors, like Dr J, treat babesia first and then treat Lyme and Bartonella. You could have babesia and not know it.

The reason is that he believes treatment is more effective when babesia is treated first. I believe babesia treatment is 4 months.

I am a patient of DrJ and what WalkingbyFaith wrote is true about treating Babesia first. ( unless it’s recently changed)
I was treated for a few months of Babesia - then Bartonella/Persisters
Lyme is treated simultaneously with Babesia and Bartonella.
Also - Babesia treatment can take more than 4 months.
Posted 9/5/2022 8:13 AM (GMT 0)

Girlie said...

WalkingbyFaith said...
Some doctors, like Dr J, treat babesia first and then treat Lyme and Bartonella. You could have babesia and not know it.

The reason is that he believes treatment is more effective when babesia is treated first. I believe babesia treatment is 4 months.

I am a patient of DrJ and what WalkingbyFaith wrote is true about treating Babesia first. ( unless it’s recently changed)
I was treated for a few months of Babesia - then Bartonella/Persisters

How could I know if I have babesia? In the lab, babesia came out negative, although there are many strains of babesia, but aren't her symptoms sweating, shortness of breath, etc., which I don't have

Post Edited By Moderator (Girlie) : 9/6/2022 7:40:17 AM (GMT-7)

Posted 9/5/2022 9:24 AM (GMT 0)
“ How could I know if I have babesia? In the lab, babesia came out negative, although there are many strains of babesia, but aren't her symptoms sweating, shortness of breath, etc., which I don't have“

My doc treats all patients with Babesia meds. (Unless that has changed) because if you have it and don’t treat - you won’t get well.
He doesn’t insist on testing for Babesia either.
Posted 9/5/2022 7:56 PM (GMT 0)
Hi Dankata, I completely understand your desire to find others who may be experiencing similar symptoms especially when your vision is affected.

I also was not treated immediately and it took me 5 years to get a diagnosis. I my overall vision is the opposite of yours which is interesting. While you are experiencing high definition vision, I have low definition…everything is very dull and dim with little detail. I have at times swirling half circles, blue flashing disco balls, flashing vision.

I have a double whammy in that I have a genetic retinal condition as well. But given I also have Bartonella I am not certain all of my symptoms are caused by genetics. I am hopeful that with my continued Lyme treatment these symptoms will resolve.
Posted 9/5/2022 11:17 PM (GMT 0)
Welcome to the forum Dankata!
Posted 9/6/2022 11:14 AM (GMT 0)

MargaritaLyme said...
Hi Dankata, I completely understand your desire to find others who may be experiencing similar symptoms especially when your vision is affected.

I also was not treated immediately and it took me 5 years to get a diagnosis. I my overall vision is the opposite of yours which is interesting. While you are experiencing high definition vision, I have low definition…everything is very dull and dim with little detail. I have at times swirling half circles, blue flashing disco balls, flashing vision.

I have a double whammy in that I have a genetic retinal condition as well. But given I also have Bartonella I am not certain all of my symptoms are caused by genetics. I am hopeful that with my continued Lyme treatme nt these symptoms will resolve.

Hi Margarita, are you from Bulgaria? Yes, I also have, in addition to high resolution vision, but everything seems dark to me. Many foreign anomalies.
Posted 9/6/2022 11:17 AM (GMT 0)

Girlie said...
“ How could I know if I have babesia? In the lab, babesia came out negative, although there are many strains of babesia, but aren't her symptoms sweating, shortness of breath, etc., which I don't have“

My doc treats all patients with Babesia meds. (Unless that has changed) because if you have it and don’t treat - you won’t get well.
He doesn’t insist on testing for Babesia either.


did you have visual abnormalities? Did you treat babesia with malarone?
Posted 9/6/2022 2:44 PM (GMT 0)
“ did you have visual abnormalities? Did you treat babesia with malarone?“

I don’t recall having any visual abnormalities.
I treated babesia/Lyme with Mepron plus two antibiotics.
Posted 9/7/2022 3:13 AM (GMT 0)
Dankataa, I am American, but I see that the name Margarita has its roots in your home country and in Eastern Europe. It must be a common name in Bulgaria.

I hope you get some relief from your symptoms soon. I have been treating for over a year and a half. My progress is slow but it will probably take me awhile to get healthy again.
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