insane... is this normal for lyme disease/bartonella, or should i be looking for something else

hi, sorry if i don't make much sense, i have a difficult time communicating due to whatever is wrong with me >.<
i'm really concerned about my lyme symptoms, because they arent text book symptoms. theyre mainly cognitive and psychological. also, neurological things such as sound sensitivity(so dreadful). i have other symptoms, ie tingling, pressure in my head and spine, tingling/burning feet, and burning all over my body, but they dont bother me very much compared to the others.
the thing is, I've nearly gone insane a few times, psychotic, but i'm able to talk myself out of it, or force myself to relax until it passes. It just doesnt sound very common when it comes to lyme disease. I've heard people talking of their lyme psychosis as just a rage or despair that won't go away/can't be controlled, and doing destructive things without thinking clearly. and i have those things, but i also have perception problems, and i have delusions, i've lost a sense of identity, i feel vile. like a monster. i feel subhuman and unlovable, and the things that i feel and perceive are so dark and frightening that i really can't be sure whether it's lyme. The world around me just doesn't look right, things look spidery and threatening. I'm scared of bugs now:c i used to really like bugs, but their legs terrify me now. my imagination gets so vivid that it feels real, i imagine bugs crawling on me, in my ears, brain, following me, and it feels very real that i shriek sometimes. my fingers will feel sharp and long... spidery also.

i got an mri done and my brain, structurally it looks fine. which i suppose is good news... i just can't tell whether i'm insane or if i truly have lyme :/ before treatment, i went through 7 months of hell with no relief. treatment has helped, i think. i can leave the house now for an entire day without an incident of fear, or seeing the people around me as having monstrous faces, i've had days where i could feel my normal self returning, or weeks where i would wake up without that doomed feeling that i'd become so accustomed to. but i can't tell if it's because the treatment is working or not :( i can't tell whether i've herxed or not... the first few days i start an antibiotic, i begin to thing that i'm allergic to it because i react badly to it, heart palpitations, anxiety, floaters, ive hallucinated rashes all over me for a split second a few times. but those reactions stopped after a few days. i haven't made a miraculous improvement, no days that are completely symptoms free, good days, sometimes good weeks, and moments when i feel clean again (my symptoms make me feel so unpure character wise). but a lot of the time, when i get back to feeling horrible again, it's hard to tell whether those good moments have just been exaggerated in my head. some people describe the things they experience, perception changes, with lyme. and the things they describe sound so much similar to my experience, it's just that my experiences sound so much more severe than others sometimes... I'm wondering if anyone has experienced anything similar, and if their symptoms have gone away, or reduced significantly

Post Edited (zoweee) : 7/17/2014 4:31:05 PM (GMT-6)

I detox a lot on and off. I started doing the activated charcoal twice a day, and it's been helping more than i expected it too. i take 1200 mg of milk thistle daily, drink a detox tea, and sometimes (not as often) use an infrared blanket/epsom salt bath.. also started managing the candida in my gut, which also decreased a lot of my psychological symptoms. do you have any other recommendations? i feel like there is more that i should be doing.

I go to a clinic that treats lyme disease long term, but I wouldn't describe them as being lyme literate. They haven't really addressed coinfections or a lot of other important things. i'm not taking combination antibiotics, and i think that i should be. and based on what i've read, and what my naturopath has said, i likely have bartonella.. I would consider seeing one if you could though! The only issue is money. My dad is paying for most of my treatment, and doesn't even like paying for the clinic I go to now(which is a lot cheaper than most llmds... it's still pretty expensive though), or the herbs that I have to take. but i asked him to pay for a lyme literate physician for me, as a graduation present, so maybe... but i think the likely route im going to take is a holistic one.

I will email you though. thank you so much

Hi there!
All of these symptoms can be caused by lyme. Lyme disease is a multi-system illness and can definitely affect your brain, especially in the later stages.

It is very important that you maintain a strict gluten free, dairy free, and sugar free diet as these foods negatively affect the brain and they suppress your immune system.

I would also strongly suggest that you have your hormones checked out because the lyme bacteria can attack the hypothalamus which controls your hormones and can cause them to go out of whack. This can cause psychiatric symptoms, as well.

Make sure that your doctor tests your reverse T3 because this is a good indicator of whether or not you might have hypothyroidism. Not every doctor will test for it.

Traveler is right. You may have a methylation defect which could prevent you from detoxing properly. You can order the test yourself from this website:

https://www.23andme.com/

It is probably cheaper to do it through them than a regular laboratory and is just as accurate.

Also, magnesium malate is very important for brain health, especially if you are having neurological symptoms.

L-theanine is also a great supplement. It helps to calm your brain down.

Detoxing is very important. It can help reduce the severity of any herx reactions and it flushes out the toxins so they do not build up in your system. Drinking lots of lemon water and taking daily Epsom salt baths will help with this. Your doctor might have other recommendations, too. If you are having a lot of symptoms, it might be a good idea to increase your detoxing.

Be sure that you get enough sleep because this can also affect your brain and don't forget your probiotics. The health of your gut directly affects the health of your brain. If on antibiotics, my doctor recommends 200 billion coated probiotics a day, which is a lot.

It is also important to tell your doctor about these symptoms and check with him before adding anything new to your protocol.

If you need to find another doctor in your area, you can contact your state lyme support group and see if they have any recommendations. Here is a link to the various groups:
http://www.lymenet.org/SupportGroups/

The above site also has a discussion board where you can ask for the names of LLMDs or lyme friendly psychiatrists in your area. You can also ask on this forum. It might be a good idea to search the archives and see what other people have suggested for detoxing.

Hang in there! I hope this helps.

http://www.thehumansideoflyme.net/ - This is a great website on neuro lyme.

Here are some articles that might interest you:

http://www.theverge.com/2013/8/21/4595712/gut-feelings-the-future-of-psychiatry-may-be-inside-your-stomach

http://kellybroganmd.com/article/two-foods-may-sabotage-brain/

http://articles.mercola.com/sites/articles/archive/2011/07/04/can-eating-this-common-grain-cause-psychiatric-problems.aspx

http://articles.mercola.com/sites/articles/archive/2014/06/19/mental-illness-hypothyroidism.aspx

http://www.redorbit.com/news/health/433627/

You're not alone! I have obsessive compulsive disorder, borderline personality disorder, generalized anxiety disorder (severe), and slight body dysmorphic disorder accompanied with occasional disordered eating, along with slight trichotillomania, and I began having increased occurrences of hallucinations in September, increased paranoia and somewhat delusional thinking, and have been having "black outs" of memory since I was 16 (a year and a half after infection, triggered by stress).
I have an awesome psychiatrist and after seeing me a few times, it's safe to say that the more psychotic type symptoms I have are definitely not related to a schizo disorder, and yours don't sound like they are either. Most of my mental illness actually does stem from my physical state. The fact that you are able to recognize that what youre seeing/feeling/etc. shouldn't be happening essentially means per rule of thumb that it's not true psychosis, but more of a pseudo psychosis instead, and likely does come from your lyme disease.

I think it's good for you to hold on to the fact that you HAVE noticed you're getting better! Having days when you feel your normal self returning is excellent! Keep in mind too, that while this applies to mental health I feel it applies to all things-- the World Health Organization identifies the recovery process as a state of both mental/physical health AND illness. Meaning it's very likely that you will waver in and out of your good days, but the point is that good days are beginning to happen now! I think that's definitely a sign that something about your treatment is working, and should hopefully continue to work and your occurrences of good days will only increase, and things will continue to become more and more clear!

thank you so much, you guys.

Hi Zowee,

Definitely not unusual, things can get pretty intense at times. Both Lyme and Bart can cause these kind of symptoms.

That feeling as if bodyparts have a different form or size from how they are in real could be caused by a proprioception problem. Have a look at the Alice in Wonderland Syndrome.

Those proprioception issues can be very frightening, I'm glad you can link them to the infections, that's very strong of you.
I've had these 'deformations of my perception for many years, and it is disturbing: a person in front of me can become a giant or a very tiny creature, my hands somtimes feel as if they are very large blocks. My behind sometimes feels as if it's 10 meters below the rest of my body. Or my head feels really small. Or parts of my body feel as if they were made out of another substance.

There are exercices that my OD learned me to get back in contact with my physical body. They help, but I would need to practice daily.

about contacting Traveler: if you click on her name, you will see her personal information as well as her emailaddress.

MarieLS

Hey zowee it very much could be Lyme. Did you happen to take any anxiety meds such as benzodiapines. Examples of this class of drugs are xanax and ativan. The reason I ask is because if you stop taking these types of meds cold turkey you can have very similar symptoms. My friend had a horrific time coming off benzos. I just thought I would throw it out there. I am so sorry you are having a hard time. We are here for you.

I was never prescribed any benzos, other than ativan, but didnt take it much as i didnt really feel like it worked for me. i had taken a few different other types of benzos before, but never developed a dependency on any of them. although some make me feel really sad, or didnt help at all. i've had incredible difficulty with medications in the past, specifically the ssri, celexa, in 2011 before i knew i had lyme. i went for a month or two without being able to sit still, was restless 24/7, and daydreamed about suicide 24/7. thank you, icurseticks

and thank you so much for the insight, MarieLS, I didn't realize that other people with lyme were experiencing the same things. i skimmed through my original post, but i don't think that i mentioned that i was have the some of those same perception issues, only it doesnt sound as frequent and varied as yours. like, my arms will feel like theyre made of different materials, my head and spine will feel like theyre growing backwards. my arms suddenly start to feel like theyre growing very long... it's really frightening because i hadn't ever experienced it before until the past month or two. thankfully i dont experience it very often right now x.x

As I was reading your post, I kept wondering if you might have Bartonella. I have Lyme and Bartonella and it caused a lot of mental symptoms and burning sensations as you describe. Lyme and Bartonella can both cause mental symptoms and even more so when you have both. Something to discuss with your Dr. You can try taking herbs for Bartonella like Houttuynia and see if you get any improvement. I started treatment for Bartonella with antibiotics and the mental herx is aweful. I've been feeling so bad mentally and can't wait to get passed this phase...