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Neuroborreliosis and psychiatric issues

Posted: Sat 28 Feb 2015 1:10
by ChronicLyme19
Oh sages of the forum, I'd love some feedback, because I'm kinda stumped.

Ok, back story, I've been doing really well since the nasty herx in Dec when my primary added in Keflex to get my lymph nodes to stop swelling. Pretty much only symptoms left were fatigue and lack of endurance, and some slight buzzing in my feet once a week or so. Other than that I've returned to a pretty normal life as long as I'm pumped full of abx. I didn't get anywhere with the neurologist as to finding proof there are buggers still in my brain, given the issues with the spinal accessory nerve/back on my right side.

Ok, so went in to see the docs and we came up with a plan of a few things to try and bring the buggers out but without crashing me like with Keflex, which literally made me feel like I was dying. It was that scary.

Added more doxycycline, no change. Added extended release amoxicillin, no change. Added in deslotradine, no change (no surprise here). Ok, so at this point, I got frustrated and decided to go strong on the next thing because nothing was having any effect (yes, very very dumb of me I know). The next thing was another herb mixture from Byron White, A-BIO, which is supposed to clear out biofilms. I'm had a ton of success adding in A-L and A-BART, both made me feel a hell of a lot better after adding them to abx, although each drop I went up flared my neuropathy. Ok, so I decide to try this new one out for a day at ten drops, instead of starting at one. That morning I freaked out in a hysterical paranoid depressive delusion type of way, started picking fights with the significant other and then realized, whoa hey something's wrong here, I don't think these thoughts/feelings are real. I had gone back to see my old psych after the December Keflex incident and she had given me some samples of Abilify to try in case things got out of hand again with any of the new med changes. So I took one of those and like magic, the hysteria went away. My spine was extremely sore that day as well as some nasty pressure feeling in my head.

Ok, so ten drops was a terrible idea, let's start from the bottom and work back up. I got back up to 6 drops when things got fun again. I took my first 6 drop dose and within half an hour the weird paranoia, depression, crying episode came back, but thankfully no where near the nuttiness of the ten drops. I also started having really nasty nightmares at night. The good thing was my energy level was up, I no longer had to drag myself out of bed, and my temperature finally was remaining steady throughout the day at 98.4-98.6F, rather than bouncing around all over the place from 95-100F. So I definitely think it's helping, but at the same time maybe it's waking up some dormant junk in my brain? before I was diagnosed and treated with lyme I had been on some pysch meds for mild bipolar and had also had some paranoia before. After being on abx for a few months I was able to drop out all the psych meds.

So my question for the forum is, if you have intense psychiatric NB flares, do you have to go on IVs? And if so, does that alone justify it? Or will IVs even really help, if most of your other symptoms are under control on orals? I'd also be a little afraid IVs could make me go full blown psychotic given the reaction from Keflex.

After December, my docs wanted to put me on IVs, but they didn't want to do so without some hard evidence it was in my brain, given how well I seem to do just being kept on oral abx. I haven't found a good neurologist to help figure this out. I had some MRIs of neck and brain, but the insurance wouldn't approve ones with contrast. Nor am I really sure they would show anything without my symptoms flaring. I wish I could have had an MRI with contrast the week I was on Keflex. The other problem is I can't get off the oral abx without crashing, and hard. You'd think I would be able to given how well I've been doing on the orals.

I tend to think there must be something left lying low in my brain if the A-BIO is bringing out past psych issues with a vengeance. And the damage that was done to my spinal accessory/cranial nerve 11 that caused all my trap/back dysfunction issues. I've done some research on the A-BIO ingredients and nothing is suspect to induce these types of symptoms.

I'm kinda hoping the A-BIO will work out all the dormant stuff and let the abx do their job. I see my psych next week, and she's very understanding, but not well versed in psych issues from lyme. She's got one other patient like me, and I was the first to really make her aware that there is a subset of her patients that probably really have lyme given how endemic it is to our area.

So I'm not quite sure what to make of all this, or what I should be doing or asking to help figure out a direction to go in.

Re: Neuroborreliosis and psychiatric issues

Posted: Sat 28 Feb 2015 13:27
by duncan
Aach. It's a crap shoot, and I know you know that.

If it were me, I'd defer to someone who I thought knew their stuff. Personally, I'd contact Eva Sapi, Judith Miklossy and Ken Liegner. All three. Liegner may just refer me to the Columbia U peeps, but it's still a call I'd make. I'd email. If there are experts you'd prefer, reach out to them. The thought that proximity is a mandatory hurdle isn't necessarily true anymore. If they brush you off, you're none the worst for wear.

Re: Neuroborreliosis and psychiatric issues

Posted: Sat 28 Feb 2015 14:45
by ChronicLyme19
duncan wrote:Aach. It's a crap shoot, and I know you know that.
Yeh :cry: That's why I'm digging around trying to find something to pursue.

The psych issues is still an area I'm not sure the LLMDs are very confident with. They know they bring out psych issues in some patients with IVs, or with herbs, but I'm not sure they know how to react to it other than referring you to a psych to help figure out what to put you on or just keeping you around people so you don't wander off into the woods. But then the psychs aren't really trained for Lyme issues.

I was already thinking of asking my psych to get in contact with someone else, but wasn't quiet sure who to refer her to.

Re: Neuroborreliosis and psychiatric issues

Posted: Sun 1 Mar 2015 9:34
by velvetmagnetta
I'm so sorry that you are going through this. The effect Lyme has on the body - and especially the nervous system - are so varied that it can be hard to tell what's causing what.

(As you know, I don't believe that herxing is good for the body or that it indicates a die-off. From everything that I've read about it, there is not enough evidence or information about it to justify torturing oneself.)

Have you found any treatments that make you feel better without making you feel worse? (If anybody but a Lymie had read that sentence, they wouldn't know what the heck I was talking about!)

I didn't write anything immediately when you first posted this question only because I really don't have any idea how to help. The only reason I am actually posting now is because I want you to know that your posts are being read and that I feel for you...I still don't have any ideas, though!

Perhaps take another look at the ingredients list in the herbals that you're taking and how much of each there are in each tincture and see if there is anything that could be causing neurological or psychiatric symptoms? It's probably not an allergy, but sometimes certain plants contain chemicals that are fine in small doses, but that can be harmful when they build up in your system?

If this stuff gets any worse, or keeps occurring, maybe you should get an MRI?

Ugh. Sorry...I know I'm not helping - but Duncan up there gave some wonderful advice! Ask somebody in the Lyme disease know. Isn't Dr. Fallon at Columbia a psychiatrist? I think he specializes in psychiatric Lyme disease symptoms, actually. He would be a great start.

Re: Neuroborreliosis and psychiatric issues

Posted: Sun 1 Mar 2015 16:13
by ChronicLyme19
Yeh, my issue is I can't get off the abx. I do great on them (like 90-95% of normal), but as soon as I stop them, two weeks in I go into full blown relapse, probably in part because of my immune deficiencies. So it's like....ok, oral abx keep the infection suppressed, but doesn't get rid of it. So we've been going down a list of things to try and finally kick it in the butt and get rid of it. This is when all the weird psych stuff started flaring back up. I'm hoping it really means it's getting rid of some of the buggers that have been hiding deep down, but at the same time between that and my shoulder winging it's making us all wonder if more aggressive treatment would help. But then again, if upping the oral doses hasn't helped, then maybe everything that's left is just sitting in round body form or biofilms waiting for the right environment?

I've had two MRIs of my brain/cervical without contrast because the insurance wouldn't cover with contrast. The best way we can think of to prove it's still in my head would be to let me off abx, let it flare badly and then throw me back in the MRI. But neither me nor my doc wants to give this a chance to grow just to prove where it still is or isn't. It's super frustrating.

Re: Neuroborreliosis and psychiatric issues

Posted: Sat 7 Mar 2015 14:40
by velvetmagnetta
Hi CL19!

I was just wondering of you had any luck with getting in touch with Dr. Fallon or anyone else at Columbia?

Also, I realize now that you said you did already have some MRIs done. (Sometimes I don't comprehend what I'm reading very well :? ) I think there is a difference (though I don't know what) in what you can detect on an MRI with contrast versus without. It might be very beneficial to see what, if anything, there is to see with and MRI with contrast. I see that your insurance company did not want to cover w/contrast, but isn't there a way that your doctor can document that this procedure is "Medically Necessary" thus obligating them to pay for it?

In addition, I have heard that with MRIs (both with and w/out contrast) it is important to get them in intervals so that your doctor can compare them and track any changes. I hope you can get your healthcare team motivated to get these procedures done and covered by insurance. After all, it is in the interest of the insurance company to get you to a healthier state as well as catch any anomalies as early as possible in order to begin any possible treatments to correct your various neurological problems.

I'm really curious to see if Dr. Fallon replied to your inquiry and what he said. Fingers crossed that your depression/anger was just PMS! ;)

Re: Neuroborreliosis and psychiatric issues

Posted: Sat 7 Mar 2015 18:57
by ChronicLyme19
No, nothing yet. Just upping the drops really slow, and that seems to keep the weird mood issues to something mostly bearable. The ability definitely helps with these episodes. On a mild version it's just super bad anxiety/depression and nightmares, but when it gets really strong I start getting paranoid/delusional. Luckily I've been able to recognize it fairly quickly and take the ability to get it to stop. It's pretty weird knowing the thoughts aren't real, but it feels so real so sometimes it takes me a few hrs to convince myself I've crossed the line. I'm still a little worried if if gets super bad, to the point at which I won't be able to tell the thoughts aren't real and then I won't know to take meds. I've started telling some of my close friends, and a coworker or two to keep an eye on me in case I am really off and to try and gave them numbers to call and say that I carry medicine on me. I'm considering getting one of those medical bracelets just in case since my boyfriend is now in Orlando and no one is around to keep a close eye on me and I'm not sure how long it will take me to find a job/get into grad school down there. And yes, I know being separated from him is hiking up my stress levels a good deal and isn't helping any, but I had waited a few weeks after he left before starting this mess to make sure any mood issues weren't caused just from that added stress. I was stable for the first few weeks until starting the A-BIO.

I wish it were just bad PMS, but this is way beyond that. On the bright side, I have no problem getting out of bed anymore and my energy level is almost normal. I've been able to do some light exercising again. No more feeling cold all the time and my temperature is much more stable. I'm hoping as the A-BIO does it's thing and clears out the biofilms that all the mood instability will settle down. The nightmares have been getting less, so I am hoping it keeps going in that direction. Neuropathy is fading as well.