Stroke at age 34 and Dr's can't find cause

Hi there! I see that this thread has been up for a couple years. But I'm new to the group and would like to see if anyone can offer insight.

Before I got diagnosed with Lyme (classic story, went to 22 doctors) I had an MRI that revealed a vascular malformation on my right frontal lobe. The neurologist said it was benign. A couple months later I figured out on my own that I had Lyme.

I had been treating Lyme for over a year, when I had a brain hemorrhage/stroke in my occipital lobe. Completely unrelated to the original vascular malformation. It temporarily screwed up my vision.

They couldn't figure out the cause through MRI or CT Angiogram. I didn't want to do a full angiogram because I felt like my body had already been through too much. Also it costs thousands of dollars.

I seem to be doing better overall in terms of my labs, etc, and my symptoms are minimal. I still have numbness in my hands and headaches, but for the most part, I believed I was doing fairly well. I never had the fatigue part of Lyme. It's been mostly numbness and pain.

Then just a few weeks ago I had a gastrointestinal incident (don't want to get too graphic, but there was bleeding involved) that, after a colonoscopy, was diagnosed as acute intestinal ischemia...which is basically a stroke in your GI tract. Coincidentally, this happened a couple hours after a coffee enema. Part of me can't help but wonder if the incidents were at all related.

From what I've read, in rare cases of Bartonella, it creates vascular malformations and then those vessels can burst open. The GI doctor now wants me to do a full angiogram of the brain to make sure there aren't more vascular abnormalities.

It's my feeling that even if there were a problem, it might not get picked up through any standard testing. Like many people with Lyme, it's hard for me to trust the medical community beyond my LLMD.

I've already spent so much money and energy on this disease, it pains me to hop on the merry-go-round again to potentially receive zero answers.

Anyway, if anyone has any advice, insight, or similar stories, I'd be really grateful to hear them. Thank you.

Hi Allingoodtime!
Welcome to our community! I'm so glad you found us.

I would agree that the likely culprit is Bartonella as well, as it has a special affinity for the vascular system, as Girlie said. Although I do know that Lyme can and does cause strokes in some people.

I would also agree with you in that standard testing from doctors and techs that don't even understand what these infections do, likely won't be terribly helpful, unless they "stumble" across it.

Do you have a good LLMD? If not, we may be of help in your finding one. Just let us know that you would like some help with this.

And of course, I have the same questions about how they are watching the vascular malformations as well.

I was finally able to remember something! LOL!

I've been talking with another Lyme patient and they have significant issues with Q fever and giant cell arteritis. It may be useful to rule that out as well.

Thank you so much for all this helpful feedback.

The GI doctor I saw referred me to a rheumatologist who did some testing for vasculitis-type issues and inflammation and it came back in a normal range. Would those numbers be out of range if it were Giant Cell Arteritis?

Full disclosure, the main reason I'm avoiding an angiogram is because my family has a history of breast cancer (BRCA gene). When they do the angiogram, they shoot radiation up through the chest and there is an associated risk. I don't even know what I'd do if I ended up having to deal with that too.

I did a CT Angiogram (or as I like to call it "Angiogram Lite") after my initial stroke and there were no findings.

My LLMD doesn't have much insight on the vascular issues except that he agrees it could be Bartonella, so he continues to rotate me on abx for that.

When the GI issue happened, I had just switched from Minocycline to Azithromycin and Bactrim. I was in a lot of GI pain after the incident and worried that the Bactrim would be too hard on me, so I switched to Azithromycin and added Cat's Claw, Japanese Knotwood, Houttyunia, and Sida Acuta. Plus a million supplements, of course.

It truly is the Wild West for us.

I live in Los Angeles, and the office I go to is a pretty up-to-date clinic. But they have a lot of patients and it's always pretty rushed. It's kind-of like the McDonald's of Lyme treatment...that is, if McDonald's cost your entire life savings.

Oh, and I got Lyme in my APARTMENT in Los Angeles. I live smack dab in the middle of the city. I woke up with a bug bite and didn't know what it was.

Peace and love to all of you!

Post Edited (allingoodtime) : 3/3/2017 2:21:47 PM (GMT-7)

allingoodtime said...
I forgot to respond to a couple of your questions, Girlie!

I tested Igenex negative for Babesia. Do you think I should take another look at that?

As for the vascular abnormality on the frontal lobe, I had an MRI in January that showed it was stable.

The negative babs result doesn't mean a while lot.

Some of the more experienced LLMD's treat for all the three B's (Borrelia, Bart, babs)

What treatments have you been on for bartonella?

It might be something to consider - trialling a treatment for babesia...and see how you react.
That's my next step.

Did you take anything for biofilms?

....lumbrokinase...serrapeptase...xylitol...lactoferrin - some examples.

How long did you treat Bart and babs?

allingoodtime said...
I started treating in March of 2015. I took Tindamax for biofilms. Maybe I should do the serrapeptase.

I wonder if the cyst busters work on the biofilms - because LL Dr.'s add biofilm busters even though they're also prescribing cyst busters...

Anytime I see head and neck and docs cant find I suggest people get evaluated by a biological dds. Something is causing all of your symptoms and it could be cavitations-root canals-fillings or implants.
A good biological dds should be able to evaluate you and let you know.
Best of luck-hang in there