OK. I wasn't sure of I should respond because you've had some great feedback from some great people here but I feel the need to. I have/have had EXACTLY what your brother has. Exact, just way more severe. I had the same situations- when I first got sick I was 27 and living with some friends who were unbelievably supportive. Then, when the psych and neurological stuff started (which was instant) they decided they weren't buying it anymore and told me "we all know this is psychosomatic". I was undiagnosed and spent the next 2 years not knowing my own name, who my parents were, where I was, waking up in the forest, full on psychotic, derealization, having bouts of rage so bad I was ripping doors off the hinges and punching holes in the refrigerator ( I used to be a boxer). I could spend all day describing this stuff; sleeping 2-3 hours a week, rampant hallucinations, having paranoid delusions so bad I thought I had been kidnapped and brought to another planet. Etc... My memory was so bad I would be on a phone call and put the phone in my pocket and forget I was on the phone.... while on the call. I was a personal trainer and had just spend 2 years writing a 130 page comprehensive workout system and if I looked at it, it might as well have been written in German. No clue what any of it meant.
It took me a total of 4 years before I got a diagnosis of bartonella. I know it may not seem like it to you guys but you're way ahead of the curve- having gotten a diagnosis and starting treatment so soon. That doesn't negate the pain, though.
I'm going to go through all of the information that I wish I had had sooner and what has helped me the most.
1) I treated bartonella with abx and herbs for almost 3 years and although I had plenty of die-off, nothing improved. Turns out I also had lyme and Babesia but they hadn't shown up on any tests yet. This isn't saying that your brother DOES, just to keep it in mind if he doesn't make the turn around you're hoping for on bart treatment alone.
2) Mast cells. This has been the big one for me. A lot of the stuff you describe is associated with bartonella but so is mast cell activation. I didn't know you can have MCAS in your brain but here we are. What started the big turn-around for me was when I got rid of everything and went out to the desert. I'm not saying you guys have to do this but there is a purpose behind it. I knew the house I was living in had mold in it and once something has been in contact with mold there's almost no way to properly remediate it. I knew I was toxic, that my environment was toxic so I had to fully control it. I cleaned out my whole truck with Lysol and vinegar, bought some new clothes and soaked them in vinegar, build some camping gear and drove out to the Mohave desert, saying I was either going to recover out there or die out there. It had been 5 years at this point and I couldn't take it anymore. Living in a tent all the way out there off the grid was where things finally started to stabilize for me. Here's what I learned:
- Toxins stimulate mast cells, so do infections. I'm not sure where you guys live but make sure your brother is around good air quality. No mold or old, musty carpets. No air borne pollutants from anything nearby. If he wears clothes or has a mattress or sheets that smell musty either disinfect them rigorously with vinegar and borax or you may have to get rid of them. DETOX. Yes, it's true, Epsom salt baths and infrared saunas are great. I built my own IR sauna for $25. I wish I could upload pix here, I would show it to you but you don't have to break the bank for one. I bought 4 IR bulbs and screw in sockets from home depot and just screwed them onto an old board I had laying around. Took the casing off an old extension cord and wired them in parallel, then put it in my closet and built a little tent out of mylar blankets I got for $1 each at Walmart. Ugly, ghetto, and perfectly working IR sauna =)
The only thing to be aware of when detoxing, especially with the sauna is electrolytes. Keep his salt levels up with a good mineral salt or buy some electrolyte drinks. Not Gatorade but electrolyte concentrates like Elyte or Matrix Electrolyte. These are really important. He also may be sensitive to heat so if he feels himself tanking in the sauna or a hot bath, take it easier to start.
3) Diet. Think of diet as a possible source of toxins and histamines. Moving to a low histamine diet helped reduce reactions a lot (mast cells produce histamines). If I eat a histamine producing food my mood will tank, anger builds up, irritable as hell, mental fatigue etc.. Also this can happen with sugar. Sugar feeds pathogens, pathogens ferment food and produce toxic byproducts, toxic byproducts stimulate mast cells, etc...
So, keep his air quality and environment clean. Get rid of musty or contaminated things if necessary. Keep his diet clean and detox. Also, it may not seem like sleep may be too easy but resetting my circadian rhythms helped immensely. Get sunlight on his face early in the morning and in the evening before the sunset. Then, no artificial lights at night. Doing this flipped me from 3 hours of sleep per week and raging panic attacks to sleeping almost entirely through the night. It's doable, I promise.
At 30 years old I was so bad I was crying my eyes out and told my mother "I need a miracle now". She hugged me, was crying too and said "I know". We were resigned to my death. But living out in the desert was my miracle. It pulled me out of the danger zone and taught me how to keep myself stable. I'm not healed but that's because I went so long being undiagnosed and didn't even start treating lyme until 7 years after getting sick. You guys aren't going to end up in that situation. I'm seeing a new doc now and am on a potent mast cell treatment and am going to be starting disulfiram next week so we'll see how that goes. Without the things I mentioned as my foundation, though? I wouldn't be here right now, not a chance.
Please keep reaching out here, people are incredibly knowledgeable and supportive. You deserve worlds of credit for being as supportive as you are to your brother and he's lucky to have you.
Post Edited (Aerose91) : 10/29/2019 10:24:47 AM (GMT-6)