Bartonella Psych Symptom Recovery Questions?

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lj23p
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 3/22/2018 12:44 AM (GMT -6)   
So this is my first post on here although for the past month or so I've been involved on these forums just as a fly on the wall. Anyway, a quick backstory.

After being perfectly healthy and free of mental or physical health related issues my entire life, I began to have neuro symptoms in November '17 (sporadic dizziness, anxiety, depersonalization, spaceyness). After going from shrink to shrink for a few months, a family friend tipped me off to Lyme and co. and I tested positive for Bartonella and Babesia, and only +41 band for Lyme. This apparently suggests that Lyme is not an active infection within me, which would make sense given the fact that I've missed all of the hallmark physical Lyme symptoms (joint pains, etc.). I've been slow and methodical with abx, so I've been ramping up Minocycline over the course of the past month and finally have reached 100mg x 2 per day. In a few days, I plan on adding Bactrim to pair with it and a week after that, Malarone.

My biggest issue (by far) has been the depersonalization/spaced out feeling and the anxiety that comes with it. I feel as though if my depersonalization were to be eradicated, my anxiety would easily follow suit. With just the mino, I've felt perhaps a slight reduction in symptoms, maybe the dissociation lifting a tad, and the general anxiety going down. So here are my 2 main questions for those of you who've dealt with what I'm talking about (specifically depersonalization):

1. is it a gradual return to yourself (as in you feel more and more clearheaded and normal every day) or one day do you just look around and realize you feel like you always had before?

2. My LLMD says that given my presentation and the fact that I was only symptomatic for a few months before beginning treatment implies that I should have a very positive prognosis for recovery and should expect to feel much better within the next few months, but given all the horror stories you can read online of people undergoing years of treatment with little to no relief, it just seems so random. What do you Lyme/TBD pros make of my case and prognosis?


Thanks for taking the time.

LJ

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32619
   Posted 3/22/2018 1:02 AM (GMT -6)   
Hi lj23p - welcome to our community.

Glad you decided to join.

RE: testing. Not testing positive for lyme doesn't mean much. High rate of false negatives with all the lyme and confection testing.

It's likely you do have it...but since you're going to be treating bart and babs, there are antibiotics that will cover lyme (spirochetes) as well.
But, you will want to make sure you're covering the lyme cysts and biofilms that may not be included in the bart/babs treatment.

I had the depersonalization only very briefly early on, but it didn't last. The anxiety was really bad at that time too...but the anxiety has gotten better over time...and I'm about 90-95% better.

1. I have moments in days that I go 'Wow...I feel completely normal - like I used to feel'
These are times when I'm almost symptom free for a chunk of time.

2. Having symptoms for only a few months should be in your favor. From my experience, generally, if you've had symptoms for a just a few months...you will heal sooner than someone who has had it for several years.

I only had a few symptoms in the first couple of months. It's probable that I would have had a better, quicker outcome than I'm experiencing. (over 3 1/2 years treating)
My symptom list kept growing as time went on...

BUT, it isn't always the case. There are people who catch it early on...and end up treating for years, too.

We do encourage our new members to read through the information contained in the thread: "New to Lyme?..start Here!" It's packed full of useful information.
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

lj23p
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 3/22/2018 2:38 AM (GMT -6)   
Did you have the depersonalization before or after you started treatment, and was it constant?

JustPiccd
Regular Member


Date Joined Dec 2017
Total Posts : 84
   Posted 3/22/2018 3:38 AM (GMT -6)   
The Malarone should hopefully mean you'll start hitting the babesia -- to me most associated with depersonalization. Honestly, in your treatment list, it seems you haven't gotten to targeted babesia much so far, so I think that addition will really help you lift that symptom.

I'm unfortunately one of those "years of treatment" people, but I will say that depersonalization was really alarming but not constant and long-term for me and once it started lifting it became way more of a background/occasional symptom.

I've seen a lot of people associate it with babesia. If you read up on parasites and "personality" it actually makes total sense, given that there's even a field of research (don't remember name) on how parasites can change behavior or personality. These bugs can all changes how people think, what we do, and things we thought we weren't capable of saying or doing impulsively, which I think in itself deeply questions what "personality" really is so coming back from that is complicated. W/ babesia for me though depersonalization and derealization would hit in waves and were just terrifying. Now that I'm back to "remembering" myself more, it still feels a lot like I'm trying to find myself as I did when I was earlier in life discovering who I was and my identity, which in itself is really anxiety producing and feels like the earth suddenly shifting on its axis or something, like I do mostly just have the option of starting from here and going forward from who/where I am now.

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 387
   Posted 3/22/2018 10:05 AM (GMT -6)   
Depersonalization, spaced out, disconnected, psychosis, dementia have been the worst symptoms for me since day 1. They're absolutely demonstrable. However, i was undiagnosed for 6 years so your prognosis will be way better than mine. The only pathogen I've tested positive for is bartonella but me, and my new doc, both suspect i have some protozoan infection as well considering my strong psych symptoms. This despite testing negative for babesia every time.

I can't give you any advice on treatment or progress since I've made none, but if you need someone to ask questions or speak to, I'm happy to. The severe dissociation really is the worst thing imaginable

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32619
   Posted 3/22/2018 10:43 AM (GMT -6)   
lj23p said...
Did you have the depersonalization before or after you started treatment, and was it constant?


Before and no it wasn’t constant - just episodes of it -

I remember saying to my husband (a few times) “I don’t know who I am anymore”

Having a discussion with my son one day after I had been recovering from what I thought was an injury (turned out to be my first Lyme symptom) - was off work for three months....I said to him “How do I step back into my life again...” Then started to cry.

This behaviour should have been red flags for all of us. I mean recovering from an injury for a few months shouldn’t have caused that reaction.
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

Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 3/22/2018 12:18 PM (GMT -6)   
I'm right there with you and do not have any obvious advice.

As for your specific questions:

1) For me it has been an up down thing. Before I started treatment and during the first few months of treatment, I was almost constantly in a depersonalized state. As treatment went on, I would experience brief moments where I was almost rediscovering myself. Like "hey good friend, there you are...where have you been?" These moments became more frequent and for longer durations. Now I am more often "myself" than not, but I still get those moments where I think, "oh no, who am I and where did I go now?" These moments have become more laughable for me now, but I do still get them, and occasionally they are the cause for a brief, but intense panic attack...but I recover from the panic almost instantly now. Progress.

2) The prognosis for anyone with Lyme and coinfections is so personal and individual. Though I only had the anxiety and depersonalization for less than a handful of months before diagnosis and treatment, I've come to discover that I had many less severe symptoms of Lyme and coinfections for over 10 years. I always brushed these symptoms off as normal bodily inconveniences, just toughing it out. This delay in treatment of the minor symptoms has made it so I am now a chronic case, most likely treating for life. I do however believe that anyone healing anything needs to have a confident and clear mind to achieve full healing. I'm guessing your doctor is giving you a confidence boost by saying your prognosis is good. Hold on to that confidence boost and keep at it. You will improve one way or another as long as you keep trying.
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017.
Symptoms since at least 2007.
Started treatment June 2017
-Artemisinin, A BART, A BAB, Biaxin, Chlorella, Liposomal Glutathione, Magnesium, Omnicef, Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free, lemon water, detox tea, coffee enemas.
30%-60% Healed

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 387
   Posted 3/22/2018 12:57 PM (GMT -6)   
Girlie said...
lj23p said...
Did you have the depersonalization before or after you started treatment, and was it constant?


Before and no it wasn’t constant - just episodes of it -

I remember saying to my husband (a few times) “I don’t know who I am anymore”

Having a discussion with my son one day after I had been recovering from what I thought was an injury (turned out to be my first Lyme symptom) - was off work for three months....I said to him “How do I step back into my life again...” Then started to cry.

This behaviour should have been red flags for all of us. I mean recovering from an injury for a few months shouldn’t have caused that reaction.


I have this stuff. I used to tell people i feel like i don't have a soul. There's just an empty void there now. I can't feel emotions or any connection to the world around me. It's just a never ending nothingness. It really is awful

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 135
   Posted 3/22/2018 2:28 PM (GMT -6)   
Knock on wood! My psch symptoms are not as bad as they were three month ago but still have them flare time to time. I hope to make a full recovery my self. My new symptoms are sharp nerve pain maybe the herbs are getting into that area finally who knows.

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 135
   Posted 3/22/2018 2:29 PM (GMT -6)   
Sorry, to answer question 6 months ago I thought I was on auto pilot and just a robot. Now I can feel joy,pain, depression, and happiness to some extent.
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