HealingWell
Search Close Search
☰

Brain MRI cavernoma

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/25/2023 7:24 PM (GMT -5)
So I had my brain mri yesterday.
After taking BPC-157 I had weird, painful and warm feeling on my right side. It was different from my usual head pressure. Kinda, it felt a bit similar too. Turns out there was some microbleeding and I have a small cavernoma on the right side.

Somebody said...
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. Cavernomas are also known as cavernous angioma, cavernous haemangioma or cerebral cavernous malformation (CCM). They can measure from a few millimetres to several centimetres. A cavernoma can get bigger, but this engorgement is not cancerous, and does not spread to other parts of the body. A cavernoma is neither a tumour nor a compression, but a malformation of blood vessels.

Sometimes the cells lining the blood vessels ooze small amounts of blood (inwards) within the cavernoma, or (outwards) into surrounding tissue. The risk of re-bleeding varies widely and is difficult to predict accurately.

Cavernomas have thin walls and so blood can leak into the brain.
I'm now very worried about treating bartonella & Lyme. I was gonna add antibiotics but I'm afraid it will give me intracranial pressure symptoms. Which in the past was painful but nothing ever happened. But now I'm afraid it would make the cavernoma bleed and cause a stroke or something else. I'm already feeling the effect from just the herbs. There is more head & eye pressure.

This is scary. My doctor, who won't understand anyway, is in vacation until next week and this is so rare, I'm probably one of a few people with bartonella and cavernoma. Or are there other people here with the same issue?

So yeah, kinda feeling stuck. And lost. sad
There was also something about sinusitis in the brain but I forgot the full sentence. I'm not home right now.
Posted 7/26/2023 6:01 AM (GMT -5)
i saw a post on the Breaking down Bartonella Facebook page where someone had put up brain scans -
before treatment there was a cavernoma around the size of a tennis ball

it shank during antibiotic treatment targeting bart - and i think completely resolved

i would not be too concerned about a small one - most likely a lot of people with these infections have them

bartonella is known to cause angiomatous growths/haemangioma in blood vessels that can occur almost anywhere in the body - the brain has lots of blood vessels so its one place that can happen
they are usually relatively benign i think.

it can be easy to "paint oneself into a corner" with worry with this illness - especially as it impacts our ability to think rationally and calmly - and ramps up our fears and anxiety.

we end up feeling trapped - damned if we do - dammed if we don't.

this is not your fault - just a feature of the illness that we need to recognise and counter by consciously changing our behaviours.

if it were me i would take as step back - recognise what's going on - and get my head out of all the possible ins and and outs of what could go wrong with treatment.

remind myself that life with this disease is an assault course of random minor and major ailments that come out of the blue - some of which can be life changing in themselves.
As a result, not treating a chronic bartonella / Lyme infection is not a low risk strategy - in fact it has as many or more risks of serious health issues as treating does.

Then, if you are treating with some known to be effective treatment, you have a good chance of getting you life back - whereas if you are not - there is v little hope of things getting better on their own.

therefore - if you are still ill - the only rational course is to treat it

once over that hurdle you can make a plan
Posted 7/26/2023 12:14 PM (GMT -5)
Rather unrelated to your question..

But I have an mri coming up in a couple weeks. Did you have contrast?

Getting paranoid about having toxic things injected into me..
Posted 7/26/2023 12:30 PM (GMT -5)
I had MR of brain including injecting contrasting stuff and it was ok, I did not observe any side effects, I think it is a standard procedure. They asked beforehand if I have allergy or reactions on the contrasting stuff. Due to all kinds of weird, strange feelings, pain and sensations going on in my brain for month I was quite surprised to find out that all was ok, no pathology. I was actually greatfull to them, and also to the cardio thorough check, because due to severe heart symptoms (short breathness, regular dull and sharp pain in the heart area) i was pretty sure I m having cardio-lyme. Again all was ok. I knew visceral pain is hard to track and often times it is misinterpreted by a patient. Perhaps it had to do with my low psychological condition - desperation, frustration and ongoing symptoms without any improvements. After these check ups I took any similiar symptoms much less seriously. These are view observations and reflections, maybe can be helpful.
I think most of us here, Lyme and Co patients, need encouragement, to continue treatment and discipline, even amidst of weird states of body and mind and most of all see good results of improvement, feeling better etc. I m already very much helped by having fortune and finding this forum and many useful points and wise advices that come from experienced and kind people who really help more new patients like myself.
Posted 7/26/2023 12:40 PM (GMT -5)
I’ve also had an mri with the contrast - didn’t feel any different afterwards
Posted 7/26/2023 1:15 PM (GMT -5)

Garzie said...
i saw a post on the Breaking down Bartonella Facebook page where someone had put up brain scans -
before treatment there was a cavernoma around the size of a tennis ball

it shank during antibiotic treatment targeting bart - and i think completely resolved

i would not be too concerned about a small one - most likely a lot of people with these infections have them

bartonella is known to cause angiomatous growths/haemangioma in blood vessels that can occur almost anywhere in the body - the brain has lots of blood vessels so its one place that can happen
they are usually relatively benign i think.

Did that person have trouble with head pressure caused by bartonella? That is my worry. I'm worried that the pressure might make the cavernoma bleed again. Every time it bleeds it gets a bit bigger and eventually you have seizures and other fun stuff. Then they have to do brain surgery. sad
My brain scan in 2019 didn't show this. I'm 99 % sure this is from taking two weeks of BPC-157. Because I developed a weird pain in my head after two weeks.

I don''t know if the current head pain / pressure I'm feeling is just bartonella or that cavernoma. It's very scary.
Since this week my anxiety has gone through the roof. It's clearly a symptom that is returning.
And I'm unsure if my buhner herbs have stopped working or they are working and the anxiety is Lyme. In any case, I will need to add something to my treatment and I'm worried about it increasing my head pressure.

... So many questions and worries.

----

There was no contrast. This was my 5th mri or something the others were with contrast. Nothing ever happened.
Posted 7/26/2023 1:40 PM (GMT -5)
Vimzor you might want to ask them if it's a bacillary angiomatosis... Which is always Bartonella (that's literally its definition as to the cause)
Posted 7/26/2023 1:44 PM (GMT -5)
When you have time, you could read these in the following order:

https://en.wikipedia.org/wiki/bacillary_angiomatosis

-->

https://en.wikipedia.org/wiki/angiomatosis

-->

https://en.wikipedia.org/wiki/cavernous_hemangioma
Posted 7/26/2023 1:51 PM (GMT -5)
i didnt correspond with the member on there i just remember seeing the before and after pictures which were impressive - i will see if i can find them if it would help you feel more optimistic

feelings of head pressure is a pretty normal symptom of lyme and bart

but remember - this is not the same as there actually being increased pressure inside the blood vessels in your brain

i know any abnormal scan / result etc is distressing - but i think you have to start putting as much effort into thinking about what you can do and what the good outcomes can be - as you are at the moment only into the worries about the negatives

otherwise is a downward spiral - puts you in a miserable place and and stops you moving forward ....

as i said - its not your fault - these illnesses make us anxious and worry

but its still a fact - that you have to change your behaviour/ approach to counter the effect.

logically, if a person can have huge cavernoma resolve completely - yours can too

and since you don't really have an option not to treat if you want your life back
isn't all the worrying about the what ifs more or less just torturing yourself ?

i don't mean to be harsh - i am trying to help - and just to cut to the chase
Posted 7/26/2023 1:57 PM (GMT -5)
found it

https://ibb.co/dgqd99g
https://ibb.co/mc0tn8m

post here - but probably only works if you are a member
https://www.facebook.com/groups/1104493829902071/permalink/1813383769013070/
Posted 7/26/2023 2:28 PM (GMT -5)
That is impressive, yes.

I also have an benign tumor, a Focal nodular hyperplasia, in my liver. It started shrinking with treatment.
But the head pressure, it can be really intense. As if someone is using a nutcracker to squeeze my head. Also very painful eye pressure. So the head pressure isn't intracranial?

The wiki links were interesting too. If this is really caused by bartonella then that is actually hopeful. I'm just worried about triggering more bleeding.

My main problem is that I'm unsure about stopping the herbs. But herbs + antibiotics will probably be too much.

So:
Sida acuta + houttyunia + cats claw + japanese knotweed:
+ minocycline
or
+ azithryomycine
or
+ cefuroxime
or

no herbs and just:
mino + azi + fluconazole or atovaquone


If I drop the herbs and turns out it doesn't work very well with just antibiotics to treat bartonella. Then the head pressure will be more intense when I switch back to something that does work.
If I don't drop the herbs and just add antibiotics, then the head pressure might be more intense too. So my preference would be something that only works on Lyme.

And so I feel unsure what to do, doesn't help that I have such trouble to decide in general because lack of dopamine has given me executive dysfunction.

Post Edited (Vimzor) : 7/26/2023 11:32:05 AM (GMT-8)

Posted 7/26/2023 2:37 PM (GMT -5)
the head pressure sensation - is exactly that - a sensation - that could be caused by many things
it does not mean you actually have intercranial pressure

the angioma does not need excessive pressure to form - they are just something bart does because its evolved to stimulate the host to make more blood vessel tissue - and thats what angiomas are

ref treatment - if you feel herbs have helped you - by all means keep them
then just start adding to that basic protocol - abx and herbs can be used together

i would go gradually - adding one abx at a time - at a rate you can tolerate

for bart i would add at least 2 on top of the herbs ( as bart unlike lyme can eventually form resistance ) - and see where you go from there

minocycline and azithromycin are good choices for bart - seem to work for a good number of people
cephalosporins can be used alongside those and also have activity for lyme - so again a decent choice

but i would just start with whatever you are on now - ad one abx for a week and see how you get on - if all ok add the next - etc

you can only go at a rate you can tolerate

you will feel better once you commit to a plan

good luck 👍
✚ New Topic ✚ Reply