Lyme Making me very antisocial - Psychiatrist suggested by LLMD

Hey Everyone,

Been treating lyme for a long time (at least for me) now and unfortunately, I'm getting very little relief. At 11 months of a few diufferent protocols of heavy oral ABX, I'm still adding symptoms. I do believe I have managed to get control of my Babesia...I only wake from pain now, not nightmares or sweats/chills.

A lot of the symptoms I'm adding are mental ones. I have a severe phobia of being around people other than my wife or daughter. I don't know if this is on account of the lyme, or on account of the stress of having Lyme for so long that it's a side effect. It's to the point that I won't even go see my parents, and I am very very close with my family. The only thing that will get me out of the house is when my daughter has a performance or recital or game and then, I often feel like I'm going to explode until its done and I'm back in the car. This seems to all have come about quite quickly, I used to be the guy that would walk up to strangers and strike up a conversation just to pass a few minutes.

I've also become extremely depressed, irritable, irrational, i see things (like a bat in my bedroom last night that disappeared after a few seconds that I know wasnt there), and I'm super easy to anger. I've been dealing with things by finding projects to totally engulf myself in from when i get home from work until I pass out so I don't think about having lyme and it does help. It still has my wife worried enough that she made a call to my LLMD who now wants me to go see a Lyme Literate Psychiatrist/Dr. in New Jersey.

This guy has all the proper credentials and he is all over the internet. I understand hes not the kind of Dr. that sits you on a couch and asks about your mother, but I can't find out what his protocols are. He is extremely involved in ILADS so I know he knows his stuff, but I'm just so worried about tossing more money I don't have at this just to walk out with more pills that will make me feel more toxic and sedated that will make me want to pull myself further from everything that doesn't happen within the walls of my own house.

Anyone been through this and come out the other side using a Psychiatrist for issues like this? I'm sure many have. Any input?

I think maybe I cursed myself and that tick really did put the lyme in a cuckoonut :(

I'm sorry you're having problems. I really hate anxiety. On some days, it makes it so hard to make decisions and get anything done! I'm really looking forward to getting it under control. I have also been trying to figure out what to do.

I think that going to see a LL Psychiatrist might be a good idea if you can afford it. You don't have to take any psychiatric medication if you don't want it. However, the LL Psych might be able to help you.

As an aside, if you are not already doing so, I would make sure you're staying on top of your detox. Toxins in our brains can do awful things. There are lots of good detox suggestions in the "New to Lyme" thread at the top of the forum.

Has your LLMD discussed the possibility of Bartonella? Bartonella can cause irritability, anger and rage. I understand that Babesia can cause anxiety and fear issues too.

Hang in there! I wish you the best!!!

IHL,

I used to have a big American bulldog that was always there with me. He passed last year and my wife and daughter won on choosing two small terriers. I would consider them anti-therapy dogs lol. Dont get me wrong, I love the lil buggers but they bark at the drop of a hat and send my tinnitus and headaches into overdrive. I don't think they are going to help me too much :p

These are new symptoms. I really hate to add symptoms to my list after this long of treatment. I haven't changed my protocol in about 4 months and this has just come on in the last few months so it shouldn't be med induced or the result of a side effect to something new.

sayyadina

Adrenal/hormonal issues should all be addressed. My LLMD has done a ton of testing and we added meds in several months ago to get all my levels either in range, or where a person of my age should be if I was on the really low end. Just tested last month and im within normal limits on just about everything.

We looked at Bart when I first went in for treatment but I tested negative and really have no symptoms that would be indicative of Bart.

Lymie Girl

Babesia I treated for 8 months with Mepron and I've had marked improvement there. With this being twice the life cycle of the blood cells Babesia lives in I would hope this would have handled the Babs. Detoxing is something done often. I learned that lesson in the first few months here.

Girlie,

I suppose your right, but I am just not one to open up to people. I can picture the appointment, me sitting there, not talking and giving indecisive answers to just about every questions lol. You never know until you try it, but it just doesnt seem to fit in even with my prelyme disposition.

I'm just so on the fence on whether this would be helpful or I should just wait it out instead of adding in more medications etc. The cost isnt that bad, one time visit, then phone consults so its not a huge drain on my wallet. My Dr. actually used this same gentleman for treatment of his own son, so I suppose you cant get a much better recommendation. I'll have to ponder a bit more I guess.

Thanks for the input everyone. I do appreciate you all taking the time.

lol, it's already been agreed I pick the next dog and it will definitely be another bulley. They are by far the best breed I've ever owned.

Right now, one more dog in this house (on top of the frogs, turtle, and hampsters) would put me over the top!!Its not that I don't get along with thefuzzy guys we have now, its just that they are way more high strung than what I'm used to :p

Hi Lymeinthecuckoonut!
I'm so very sorry to hear of your issues, but I can totally relate. At different times in my illness/recovery the first time around, I had complete paranoia set in for me, plus had the different sensory hallucinations, and rage episodes - quite interesting considering I'm female and all of 5'1"! I bet I was quite the sight!

I made it through those times, with tremendous understanding and help from my husband and my daughter....and a few pills. Did they "dull me" - yes, but it also helped control those episodes and it was only for a short time, so in my eyes it was totally worth it! And I'm sure it helped my marriage! I can't imagine how my husband felt as I was having these things happen.

If you aren't really open to therapy (I wasn't either), then I would greatly encourage you to use the pills to help control the symptoms that have you reeling. It's only for a short time while you heal, then you come off of them.

And a word about your treatments - if you have been on this protocol for months now and you have new symptoms coming on, the protocol isn't working for you and the infection is continuing to spread further through out your body. I would encourage you to change up your protocol, start a new one, or even add in some herbs. Many have added in herbs to find that their pharma protocol works better.

So, before I really hit the wall not knowing I had Lyme - one of my major symptoms were anger, and paranoia. I can successfully say that I no longer have either at all. I went to the Pfieffer Treatment Center because I didn't know it was Lyme, Bartonella and Babesia at play. They did discover I was deficient in zinc which can cause extreme paranoid symptoms. So I took 100mg zinc piconolate (per the doctors advice) for a month and saw a huge turnaround in the paranoia. Pretty much gone. The anger however did not go so quickly. In fact I thought I might be bipolar. Long story short - treating Bartonella for 8 months got rid of the anger/anxiety issues but the paranoia was kicked with the zinc. I continued to supplement zinc for a year or so and now I don't take it at all. Our bodies start having all sorts of deficiencys because they are fighting so hard and zinc deficiency is a known side effect of Lyme (Klinghardt KPU). Anyways, I wish you the best.

I will add that every time I took liposomal glutathione (which detoxes the liver) I felt very angry and irritable within 30 minutes. I believe in chinese medicine when someone gets really angry (like with Lyme) they relate it to the liver i.e. 'angry liver'. It may be a good idea to take some Milk Thistle and begin gently detox the liver to release the toxins that could be irritating it.

Thats my two cents of what worked for me. I know everyone is different. I wish you the very best and I am sorry you are going through it right now.

SLML said...
So, before I really hit the wall not knowing I had Lyme - one of my major symptoms were anger, and paranoia. I can successfully say that I no longer have either at all. I went to the Pfieffer Treatment Center because I didn't know it was Lyme, Bartonella and Babesia at play. They did discover I was deficient in zinc which can cause extreme paranoid symptoms. So I took 100mg zinc piconolate (per the doctors advice) for a month and saw a huge turnaround in the paranoia. Pretty much gone. The anger however did not go so quickly. In fact I thought I might be bipolar. Long story short - treating Bartonella for 8 months got rid of the anger/anxiety issues but the paranoia was kicked with the zinc. I continued to supplement zinc for a year or so and now I don't take it at all. Our bodies start having all sorts of deficiencys because they are fighting so hard and zinc deficiency is a known side effect of Lyme (Klinghardt KPU). Anyways, I wish you the best.

I will add that every time I took liposomal glutathione (which detoxes the liver) I felt very angry and irritable within 30 minutes. I believe in chinese medicine when someone gets really angry (like with Lyme) they relate it to the liver i.e. 'angry liver'. It may be a good idea to take some Milk Thistle and begin gently detox the liver to release the toxins that could be irritating it.

Thats my two cents of what worked for me. I know everyone is different. I wish you the very best and I am sorry you are going through it right now.

bipolar like symptoms can be caused by lymes or associated coinfections.

I may ask the doc to take a look into the bart a little more. Since I've had very few telltale symptoms, its really never even been in play as part of my problem. I tested negative for Babesia, but I had every symptom in the book so that was a no brainer.

I'll also take a look into the zinc, thanks for the suggestion.

Sueg, I was lucky enough to have had my LLMD use this guy for his son. If your looking for one in your area, im sure ILADS could give you some recommendations. This gentleman im seeing is big there. If your in the PA NJ area, I'd be more than happy to pass along his info.

I also have a very limited number of LL psychologists/therapists that I can see if any are close to anyone who wished the information.

Thanks Lovemychildren and springsjean. I appreciate the feedback on him. It is always extremely reassuring to see positive feedback from the folks in this community. I've been looking him over on the net and have watched several presentations hes done as well and he does seem very wise.

Sounds as though I'll likely be doing one personal visit then mostly phone consults and that was a relief. Its pretty good jaunt away and me and car rides don't do well. I am anxious to hear what he has to say and look forward to speaking with him after looking into him.

Thank you all for your input, help, and feedback. This forum really is a fantastic resource.

Bumping this.

B. Burgdorferi is most likely a bioweapon meant to incapacitate. There is a great twitter thread proving all of this and it talks about the genetic structure of this strain and that it very well could have been made in a lab to be more virulent.

As for me, once a bubbling extrovert, this disease, and the immune tolerance it induces, has caused a kind of social anxiety which I had never experienced prior.

It's been years, and sickness syndrome is just one downside among many another that comes with really any major illness. According to some, staying home and doing nothing while feeling like someone is injecting paint thinner under your skin is better than working 80hrs a week (which I use to do)... it's not, because being poor sucks.

It's a terrible cycle, but I honestly cannot comprehend conversations for long periods of time like I use to, and many people will take offense to this because humans want to be liked. Humans want reciprocation, and like animals, humans will eventually pull away from any sign of said weakness. I cannot say that for all humans, as there have been many in my life, some strangers, who have stood by my side, one in particular, funny enough, a Trappist, which isn't at all surprising. They speak only of the things that God grants them, and that helps ease my anxiety. There's no judgement here, they bring an aura, and they don't push small talk. They live in the silence of God.

I think also its the overall view by the public that 'Lyme' is easy to treat, hard to get, and any claim of disability, chronic or not, must be all in your head.

That idea was propagandized purposefully but it has marginalized us who suffer, obfuscates the truth and gets us more into our heads. I know it did me. "Nobody understands..." and really nobody that has not suffered from it does. They might want to, but knowing how I felt when my mother suffered from it before I, it certainly puts this thesis into perspective. I simply could not comprehend, and I really didn't want to. It's the case of Plato's cave.

For me, I'm just not able to have a normal conversation anymore. Spirochetes in brain, terrible memory problems and immune disequilibrium/tolerance have caused havoc on my neurological state, and I'm unable to comprehend or relay and learn information I once was able to do with ease. It's totally normal, they say, going from an A+ student at a university, while not really trying, to an F student and trying my hardest. That was 20 years ago! That's how 'Lyme' impacted my brain. It destroyed my ability to think coherently and it dried up my confidence. The ability to think logically has come back, but the mental fatigue to do so is excruciating. It's why I don't post here as much anymore.

I'm sitting here now listening to people bicker among themselves, going from topic to topic, and after 30secs I'm already tired and need to leave. And I'm not even part of the conversation.

I've had too many incidences with strangers and men and sometimes women I know who feel that sickness is a sign of weakness, and in the grand scheme of things, it kind of is. I''m divorced because of illness, because I cannot provide for her. It has robbed me of everything But my life and love for God.

Every other day there's always a conversation I cannot keep up with, or I cannot comprehend, and more often than not, can not reciprocate. Do this 10,000 times a year with someone else and you begin to see why Lyme, excluding the physical neurological state it causes, induces further anxiety.

I've even had work buds, prior o my departure, having known and loved me for years prior to illness, then when I was at m worse, bicker among themselves that "I don't like them anymore, and I'm kind of an ******," simply for not talking or being able to comprehend their conversations or wit, which I lost.

I think Lyme is a wit killer.

Anywho, I just tell them now, in mid conversation, "listen, I can't talk anymore," and I walk away.

I feel better doing it this way. I'm going to try to hold on to what little I have left and love those closest to me.

itsnotjustlyme said...
Sometimes I feel like a leper, and sometimes its hard to relate to the people in my life, especially since I work in a rock climbing gym where everyone has a 6 pack and no sense of mortality.

Sometimes I feel like I understand something that only our elders should know. Like I fast-tracked my way to gratitude and wisdom. Don't justtt define yourself by Lyme. Define yourself by what you've accomplished and the adversity that has yet killed you!

I know I'm not supposed to advertise my website so I will just copy paste this from an article I wrote called Lyme Lessons: Why You Need Lyme:

We may fear loss of physical attractiveness, physical strength, and capacity for independence. We may fear the loss of easy acceptance and dignity and respectful recognition. Many fear the very loss of place in culture that would prefer to eject the aged as a too-vivid reminder of decrepitude and mortality. We may fear the loss of mental agility, glowing health, and the circumstances of our lives as we’ve become accustomed to them, with their veneer of freedom. We fear these attacks on who we think we are and on what we think we need and on how we want to be perceived. We fear the loss of our illusions of control.

Beautiful!!!

I'm thinking of going to a Christian retreat to pray for awhile. The one thing that has my brain in a knot, is not being able to relate to the working crowd that surrounds me. By relate, I mean, I use to work 80hrs a week, I was, like that Under Our Skin 2 girl, a stage manager, so I was blue collar, but that was many, many years ago, and for many years after that I tried to get disability, which I eventually got, but that was a job in itself. I do not work anymore, but I do have goats and sell goat soap and hopefully goat milk... illegally.

A lot of conversations between men are about work, development, buying property, blah, blah, and I cannot reciprocate. If it's politics, sure, I once cared about that, but not anymore, seeing that none of that gets us anywhere. Family... well I'm divorced now, soooo. It's really my overall apathy and disinterest in another person's conversation that harms my own mental stability, on top of not being able to focus anyway.

It really stinks.

its natural to feel more insular if you are not feeling well

some of the chemicals that circulate inside us when we are ill - be it from cold or flu - or lyme and co - are specifically designed to keep us holed up and resting - not using up valuable energy

the mental health impacts - that often cause people to be more socially anxious or depressed and therefore simply not seek out company ( depression is often typified by a person not seeking out the things that would normally bring them pleasure), are a second layer of factors reducing a persons likelihood or ability to socialise.

however - humans are social animals - we all require some social contact to feel at our best - and social isolation has real measurable and actually quite detrimentally effects on our physical health.

for this reason i would say its important to do what you can to offset the inevitable headwinds acting against your amount of social contact.
of course there will be limitations on what you can do - or what you enjoy vs what you might have done before
loud busy gatherings or drinking late into the night might be out - but a walk in nature and a chat one on one with a friend might be entirely doable and bring a tremendous sense of wellbeing.

inevitably a lot of people will distance themselves from you when you are ill - part of this is a natural human instinct - a fear of what we don't understand - or a fear of contagion - as a kind of survival strategy.

some will fail to understand or believe what you are going trough - and write you off as some kind of hypochondriac

you could view this disease as taking those things away from you - alternatively, you could view it as revealing to you what kind of friends these people were to begin with - ie relatively superficial friends - fine in the good times but who could not be relied upon when the chips were down and things got tough.

its also possible to find new friends - even with this illness - they may be different people than you might have been drawn to before - that's probably good - after all we are supposed to live and learn.
while in-person interactions are usually the best even if its only with one or two people who you feel understand you

there are also now multiple channels for meaningful relationships with people at a distance who share some of the same challenges - understand what you are going through and can offer support

i would say - take care not to give up on a social life all together - there are challenges of course - but its important that you have some people in your life who you feel understand you - and its worth putting effort into cultivating those friendships

ref the title of the post - i would say absolutely use the services of a psychiatrist if you feel your attitudes or beliefs around friendships are holding you back