I didn't feel like I had depersonalization most of the time. But lately I was sharing some things that I wrote when I was really sick, with my sister, and she said that what I wrote sounded like a completely different person than the way I acted at the time. I guess I was unable to express myself verbally.
One of my relatives had horrible depersonalization and neurological issues for a while, and was much worse (couldn't talk, had to be in the hospital). They never figured out what exactly was going on. But now they are pretty much completely well. So your brain can heal and rewire itself.
But it sounds like you're thinking like yourself, even if you're not feeling like you are yourself. It's really hard to watch everyone going so far when you're stuck. I have done a lot of that, but I have come to doubt whether personal or professional achievement is everything that it looks like on the outside.
It's great that you can take care of yourself, and you have a LLMD.
It seems like just clarozithomycin or rifampin would be an unusual place to start, but I really know nothing about antibiotics. Have you tried treating for viruses or parasites or maybe babesia? I don't know why, but I think they've been the cause of a lot of my neurological symptoms.
I went to my current LLMD thinking that i had babesia because it seemed all my crazy psych/neurological issues were what i saw listed for protozoa infection. He also agreed and believed babesia. However, he ran thorough Igenix testing and did a blood stain himself and it all came back negative for parasites. Just bartonella encephalopathy and mast cell activation are the current rx's but bartonella treatment isn't doing anythingIs the blood stain 100% accurate? I know the Igenex testing isn't....but I'm not familiar with the blood stain/microscopy.
I do know that Dr. J figures if you don't treat Babs....you won't heal from bart. And sometimes the Babs symptoms aren't front and center.
So, the psych symptoms could all be bart...but because you have babesia (hypothetically speaking) - you won't be able to get rid of bart.I have no idea how accurate a blood stain is. It feels like a good adjunct test to me.
I know Dr J emphasizes babesia treatment but how does he test for it?
He doesn't test for it...he treats everyone early on for babesia. He gauges when to stop by response...and also palpitates the abdomen and feels for liver and spleen swelling.
I know it sounds odd to treat everyone for babesia, but he feels the majority do have it.
And in my case.....i stalled out on lyme/bart treatment - and a year later...my LLND wasn't willing to even treat me for babesia.
If I didn't have babesia but was treated for it early on - I'd still be further ahead now IMO.Wow, so he just assumes everyone has it? Crazy. Was treatment for babesia what broke you through your plateau?Yes, he does. Are there some people who don't have babesia....and get treated for something they don't have? I would think so...and that's not ideal...but in my case I would have been way further ahead if I had seen Dr. J. early on. Not only did I plateau...but the babesia went unchecked for a long time while we did overkill on the bart meds.
I ended up self-treating babesia in 2017....buying meds online...and also received a 'gift' from someone because I couldn't get mepron online.
I think that may be why I did a short run on babesia meds with Dr. J.
I don't know for sure yet, if I've broken through my plateau....as I just finished my babesia focussed treatment with Dr. J.
I know something seems to be changing...hopefully it's for the better...so hard to tell.
I'm a bit leery of this persister protocol...I keep thinking that now that Babesia is out of the way...I may just need to do Bart again - with Rifabutin...do I need the Dapsone and Daraprim? I'm concerned about
the folic acid levels dropping (causing anemia) - and at this point i don't think I can get the folic acid tested...Dr. J. never discussed this with me (not good) - if he had given me a lab req for monthly folic acid tests...then I would have told him I can't get it done here....but I was home when I pieced it all together...
One reason is that just prior to seeing Dr. J. for my Aug appt., I snuck in some bart meds for a couple weeks and I had what I think was a herx. ...including a fever...which I've never had with lyme and co's. lots of pain...and then next day - I felt good - one of the best days I've had in 5 years.
I've had a pretty good week...including my days in Washington DC.....
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi