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Posted 9/28/2019 8:44 PM (GMT -5)
I keep having this every time I try to increase my sida acuta. Is this a bartonella thing or could this possibly be babesia? I don't have the typical babesia symptoms (air hunger, night sweats - though I do get very hot at night sometimes). Or is it something else? MCAS? Regular old Lyme? It's almost like a panic attack and it occurs about 6 hours after I take the herbs. If it happens while I'm in the car I have to pull over because I feel like I'm going unconscious.
Posted 9/28/2019 8:53 PM (GMT -5)
Sounds like really bad MCAS.
Posted 9/29/2019 12:42 AM (GMT -5)
No palpitations or vibrations no. Just the feet vibrating all the time at night. Yeah if DP/DR is a symptom of bart then that must be it because I definitely have that. LOL @ release the Kraken. That sounds like how it happened for me. I was doing hot yoga an hour a day up to three times a week and within a month I couldn't even get up and do a single sun salutation (which is like, incredibly easy). I was lying on the mat the whole session. Interesting about babesia suppressing bart. I tried treating babesia but now that I recall, the herbs from Etsy might not have been strong enough to make a difference. But I didn't notice anything good or bad on them so I assume I didn't/don't have it. I decided to venture away from my doc's suggestions and yes got bart-specific herbs. He seems okay with it. But I have to raise them very slowly or this happens. At this rate I can only go up a drop of each every 10 days spread out. So getting up to a full 30 drop 2x daily dose is just not going to happen.
Posted 9/29/2019 7:29 AM (GMT -5)
I've had severe 24/7 DP and DR for 7 years now. I thought too that it must be bart or babesia but over a year treating all three infections never did it for me. I suspect mine may be autoimmune or MCAS
Posted 9/29/2019 11:42 AM (GMT -5)
So sorry for all those suffering. My sister has depersonalization really bad as well but has no idea what causes it. She says the sauna is what helps most. Has anyone tried anything else that helps? Sending you all love and support.
Posted 9/29/2019 1:40 PM (GMT -5)
Thank you for the info Jova. How long have you been on the tincture? I hope it gives you some relief. Do you have a sauna by you? I’d highly recommend finding one!
Posted 9/29/2019 3:26 PM (GMT -5)

JovaLyme said...

HeartsinPain said...
So sorry for all those suffering. My sister has depersonalization really bad as well but has no idea what causes it. She says the sauna is what helps most. Has anyone tried anything else that helps? Sending you all love and support.

I'm beginning to think that high levels of ammonia in the brain is the cause of it myself.

Desperately trying to find something that shifts it at the moment. I'm currently using Jernigan's Antitox formula but not seeing much benefit as of yet.


=======================
Sorry if you’ve already mentioned this - have you tested your ammonia levels?
Posted 9/29/2019 8:27 PM (GMT -5)
"Just a tip, maybe you're on a strict diet as is, but you may want to get on a stricter diet.. I mean all vegetables and some meat, some fruit and nuts/seed, cutting out all carbs, processed foods, and anything with sugar."

Yeah I know I could clean up my diet more. I did a strict keto diet for two months. I did have symptoms abate. But I was so bored and moody because food is a big part of my life, for better or worse. I eat clean during the week for the most part but weekends are more lenient. I don't have a whole lot of sugar but I do eat lots of carbs on the weekend. Nowhere near SAD standards of course but more than keto amounts for certain. The way I rationalize it is sustainability. I'm going to eat these things when I'm better so I want my body to learn to deal with them now. And at the same time life is passing me by and I don't want to be spending a year in food purgatory, especially considering I am an active food blogger.

"I have these symptoms too jb1994.

I'm depersonalised almost all the time and feel like I'm going to black out several times a day. Plus I do have the vibration and palpitations that Charlie talks about. Scares the hell out of me to be honest.

They are by far the worst symptoms of lyme that I have. I feel your pain!"

Yeah I have noticed my anxiety is increasing lately too. Like in anticipation of all those things happening. I can't tell if I'm having symptoms or if I'm just working myself up because I think I might be having symptoms. It's all very confusing.

I am at a standstill on the sida acuta. I can't even take 1.5 drops. Every day has ended with a worse night of sleep with last night topping out at 3hrs at best. Been stuck at one drop for about two weeks now. Is it even worth taking or should I just ditch it and focus on raising the houttuynia and knotweed? Still iffy on the rifampin prescription sitting in my bathroom too...
Posted 9/29/2019 9:59 PM (GMT -5)
I've had ammonia tested probably over 30 times and it's always normal- sometimes low
Posted 9/29/2019 10:03 PM (GMT -5)

Aerose91 said...
I've had ammonia tested probably over 30 times and it's always normal- sometimes low

Yah - Im not sure about it - unless it’s really high...then maybe it’s pertinent.

Mine was over the range - but not by much.
Posted 9/29/2019 10:16 PM (GMT -5)
Charlie: Well Jesus don't go making my anxiety worse by telling me it will cause me mental issues and I'll need seven types of psych meds.

My LLMD says Bactrim is risky for people with allergic reactions so he didn't prescribe it. I'm scared of the rifampin. Insomnia has been unbearable these last few weeks. I cannot just keep taking stuff if it's preventing me from sleeping. I don't know why you don't consider this a herx, it most definitely fits the description.
Posted 9/30/2019 12:01 AM (GMT -5)
Really? That was completely unhelpful. You do realize how damaging what you said can be, to someone already dealing with anxiety, right? There's a time and place for that and this wasn't it.
Posted 9/30/2019 1:03 AM (GMT -5)
“Charlie: Well Jesus don't go making my anxiety worse by telling me it will cause me mental issues and I'll need seven types of psych meds.”

Yikes - 7 types of psyche meds?
Seriously?

Charlie - where did you get that from??
Posted 9/30/2019 8:12 PM (GMT -5)
Charlie, if you follow my posts, you'll know that my LLMD prescribes antibiotics and it was actually my idea to start the herbs. So please don't go making assumptions on my doctor, who is very highly educated and qualified.

I have been on minocycline. It didn't do anything. Same with Alinia. Rifabutin is a stronger rifampin so why would that be a better alternative?

I can no longer tolerate sida acuta. Not being able to increase past a single drop and dealing with anxiety it just was useless even bothering. I'd rather go up on houttuynia and knotweed since those are slightly easier to tolerate. I am currently talking to my LLMD about our options.
Posted 10/1/2019 8:28 PM (GMT -5)
Charlie, cut it out with your condescending attitude. You are actually putting words in my mouth.

"He doesn't seem qualified and educated on bartonella if he thinks mino alone is going to treat bartonella."

I literally *never* said this was the case. Please quote me where I said he is only putting me on mino for bartonella. In fact I don't even think I said I was on mino, because I'm not.

"Every Tom Dick and Harry is called a LLMD just because they treat longterm with antibiotic and herbs, doesn't mean they are educated or qualified like Dr. J, Dr. H or Dr. B on biofilms, persister cells, coinfections like babesia and bartonella. "

Again, **** off with your attitude. My doctor is highly qualified, just because he isn't a LLMD "celebrity" doesn't make him any less intelligent.

"The Osteopath in Michigan who's considered an LLMD, wanted to send me to his church group after my Bartonella symptoms came out. And the other LLMD in Michigan just treats longterm with monotherapy minocycline, he doesn't treat either babesia or bartonella head on. "

Great, not my experience, not my problem. Stop projecting your poor experiences with doctors onto me.

"There's only a few drugs that actually work against stationary Bartonella, aka dormant persister cells. If your supposed LLMD knew this, he would be using the proper multi combination drugs, but he isn't. "

Dude. You don't even know what my doctor is doing! We literally JUST STARTED TREATING bartonella, I haven't even barely spoken to him about it in office because we're just starting to address it. Stop calling him a supposed doctor. He has multiple degrees, has treated many, many patients, and he is a he** of a lot more qualified than you. You seriously need to stop trash talking him.

You can kindly stop replying to my posts because apparently you aren't even reading them. If you write one more post denouncing my doctor I'm honestly going to report you.
Posted 10/2/2019 8:47 PM (GMT -5)
Jolaleye, yeah, it's terrible what we have to go through, both while we're sick and when we're attempting to treat ourselves, it's really da**ed if you do da**ed if you don't. I've tried fasting but it doesn't seem to stick. I was doing 36 hour fasts once a week for a month and they were just about the death of me. I think I can only tolerate 20 hours. So I'm going to try to do that twice a week. On a day to day basis though I can only go 12 hours before I need to have a bite of something.

I've been managing the symptoms for a year though so I don't know. I quit the sida acuta but I still have to use something so I'm just slowly tapering up on houttuynia and japanese knotweed, only at three drops of each as of today. But if there's one thing I learned so far I absolutely cannot push myself and my body to fix itself. There is really no powering through it with this illness.

I think I'm doing okay now with just the two herbs. But my doc is prescribing different antibiotics for the bart because of my reservations about Rifampin so I hope I don't herx on those too...it's either take them and suffer or continue to be sick and suffer even longer... sad
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