Bartonella or something else?

Hi everyone,

I have been suffering for years and went through many docs like a lot of you who promise to help but got no where.

I have had mold exposure but I have also been treated in the past for Lyme. One blood test came out CDC positive years ago but I got no real treatment, it was always a focus on something else. I have had many blood and urine tests coming out indeterminant, equivocal, or negative to just about everything. My problems reduce for a period of time and I think I am improving and then they start again. Unfortunately, this past year has seen no improvement and it is a steady downhill. I suspect COVID and sinus infection and taking some antibiotics triggered something.

My doc suspects Bartonella and mold. I was bit by a cat when I was little and always had nerve issues, anxiety, diagnosed with Epilepsy (totally controlled) and on and off weird illnesses that makes me look I am crazy. Bartonella was never even considered.

My oddest set of symptoms is when I try to have a bowel movement, all of my symptoms increase dramatically. I start to sweat, my heart races, pain everywhere increases, fatigue is horrible, and anxiety is through the rough. I don't know if I am going to make it. I gets crazy and then diarrhea and nausea ensues. Some days are worse than others and days I am constipated are much better. I think is a vagal nerve issue. This occurs when I am at my sickest and I am guessing that a flare is starting. This could never be explained or understood by ANY doctor including several of the Functional Medicine Docs I have seen. I feel I am the only person who goes through this and everyone wants to treat my gut. My tests come out clean --- no parasites, no odd bacteria, no candida, etc. Leaving me once again without an answer.

I also suspect Bartonella or the mold has taken over my nervous system. My other greatest symptom is so much muscle pain, soreness and fatigue. I feel I can't do anything with my arms because the pain goes through my neck, the back of my head, my shoulders and down my arms making them so weak and fatigued in addition to my feet and lower legs hurting so much. I wear shoes around my house but it seems that my feet and legs get worse with sitting. I feel better when I do stuff, not rest. Weird to me. Resting doesn't help anyway.

I am starting on some gut killing microbial herbs and will soon resume the Nutra-BRT. I was having issues so I paused the Nutra-BRT and my doc changed up the order of treatment to slowly introduce 1 treatment at a time.

Does anyone else deal with such an odd chain of events? I don't think it is herx. I am increasing my detoxing but nothing changes. I tried many different MCAS treatments and saw no difference so I stopped that.

Thank you for any and all replies.

I took Ativan for a few months because of this issue and then did a slow taper off. I take GABA when I get anxious and panicky. It usually helps. I tried Cromolyn Sodium for a while from my Allergist and I thought it was helping but after my recent illness, it was doing nothing. I waxed and waned and continued to go downhill. I stopped it temporarily to see any difference but it is hard to tell. My doc said if it gets worse to restart. That is I plan to do.

I do breathing exercises throughout the day but struggle with focus because my pain and fatigue get the best of me along with anxiety.

I think the use of my arms too much (and that is hard to determine, it changes) makes me crash for days. My muscles are so tight and weak that anything is a problem. Unfortunately I stay in bed half the day and never get out because of this. My stress level is rising also. I know that plays a huge factor.

hello Ragin

sorry to hear of your troubles

i know how frustrating it can be when your health care providers have no answers for what are very real symptoms

i have not had anything quite a severe as you describe - but i have had dizziness and sweating and seeing stars during/ immediately after bowel movements - i also suspect its driven by some kind of disruption in the nervous system -

for me i think this is in turn primarily driven by bartonella ( i have bartonella and lyme )
in your case the type of fatigue and generalised pain are a very good fit for bartonella also ( though of course this does not rule out other causes)

bartonella can cause havoc in the gut ( it infects the cells that line the gut and these are the same cells that drive a lot of the interaction with things like the gut bacteria and the immune system - so all sorts of immune dysregulation are a common side effect ) and this may be the mechanism by which it affects the parasympathetic nervous system and the vagus nerve

another thought - is that many of the symptoms you describe after bm's could be caused by a sudden drop in blood pressure caused by bowel movements for some reason
seeing stars,
heart racing
fatigue
anxiety ( sudden drop in blood pressure to brain can cause wild anxiety attacks)

this may still be caused by the above mechanism - and bartonella is renowned for causing blood circulation issues - but it could be worth a quick test

my ex girlfriend had bartonella - and would get wild anxiety attacks and rages - a neurologist asked her, when this happened next, to try lying on her back on the floor with her lower legs and knees up on the bed. we were both sceptical, but the attacks were so distressing we were willing to try anything - miraculously it worked - and her anxiety attack resolved within about 2 minutes of doing this.

the conclusion is she was having a loss of blood pressure to her brain - and lying down with her legs up allowed blood pressure to be restored with a bit of help from gravity - and symptoms resolved.

worth a try - at least - if it helped it could give some insight into the cause of the symptoms