posted
This is long, but please read it, I need some consolation, support, and words of advice from people who know about this disease.
I definitely had the erythema migrans rash, back in the year 2000, when I was 25. I had just returned from campping. I had no clue what it was and I didn't go to the doctor because I had no insurance. I had no history of psychiatric problems.
Six months later, I started having night time hallucinations. Visual at first and then auditory and olfactory. I became extremely sensitive to noise, lights (bright, flashing, fluoorescent, etc). I became incredibly anxious and agitated by them, especially the noise.
I started having intense mood swings and I became extremely upset withing a matter of seconds.
When upset, I started hitting myself, pulling my hair, slamming my head against walls, etc.
I had difficulty speaking and finding words at times. Sometimes what I say makes no sense whatsoever.
Some other sympptoms include:
Feeling detached from myself and from reality
Very disturbing intrusive thoughts
A lot of muscle twitching and balance problems
Inability to read at times (letters look like alien symbols).
Electrical shock sensation in my head
Shooting, stabbing pains in my body
Very stiff and sore neck and shoulders
Crackling sound/sensation when I rotate my neck
Diagnosed with fibromyalgia/horrible upper back tenderness and soreness.
Shooting pain and then numbness in my arms (usually left) and I can't use my hands/fingers for about 10 minutes.
Left side of face has drooped at times, but not for long (maybe 30 minutes or so).
Joints in my fingers, toes and knees hurt and are stiff.
Anyway, there are lots more. But back in 2007 I read an article on Neuropsychiatric Lyme and it was my "Aha" moment. I realized I had every symptom and plus had the rash 7 years before.
I went to my regular doctor and she acted like I was a hypochondriac, was very condescending towards me. She reluctantly gave me an Igenex/ western blot test. It was negative, although I had some antibodies on every band. I felt stupid. She said it was all anxiety and stuck me on Zoloft, which didn't help.
Fast forward to 2010- anxious and irritated 24 hours a day, and all my psych problems got 10x worse. On thanksgiving day I attempted suicide after my boyfriend and I got into a horrible fight. I had tried to leave and he was worried I would crash, so he restrained my wrists and I totally snapped. I don't even remember what all I did, but I do remember feeling my teeth crunch THROUGH the skin on his chest. Yes, I bit him, like an an animal. He sarted screaming he was going to call the police.
If I went to jail, I would lose my teaching credential, my ability to take care of my kids, and probably custody of my kids. So I locked myself in the bathroom and downed every pill I could find.
Anyway, I survived. But I ended up in the psychiatric hospital 2 more times over the next two months for episodes of severe psychosis. I was put on a mood stabilizer and Celexa. I have to admit they have helped quite a bit with the moods but not at all with the neuro and skeletomuscular problems. I still twitch, have the numbness, electrical shock feelings, stiffness, pain, etc. Everything except the mood problems.
But it drove me to desperation and I still was convinced I had lyme, so I shelled out the $$ to see a LLMD even though it is not covered by my insurance. He said that he is 100% positive that I have it.
But guess what? Another negative test, this time through Spirostat which is a blood PCR test with molecular confirmation. I've heard it's one of the best.
The doctor still thinks I have it, but he seems kind of unsure. I'm terrified that I DON'T have it and that I'm just plain psychotic, beyond help.
At least if I have lyme then I feel like there is some hope and that it's not all in my head, or that it's my character or personality. And I don't want to be on psych meds my whole life.
Plus, my problems have greatly contributed to the demise of many good relationships. Especially this last one, which enden so horribly. I thought he was the man I was going to marry, and he's gone.
Please help...do you think I have this, or am I just a mental case? I was NOT like this at all prior to that damn camping trip and the rash (never saw the actual tic, but I read they can be the size of a pin head and often go undetected).
Oh and when I started Doxy my psych/mood problemscam back the 4th and 5th days on it. I feel like I was almost on the verge of psychosis again but I kept telling myself it wasn't real and would go away. I think it was herxing??? But now the doc raised my doxy from 200mg to 400- today is my 4th day and I feel fine. Shouldn't I herx again with the increase if I really have it?
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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posted
I do not have a positive test from anywhere either. The reason 2 doctors and I think it is Lyme is because we have ruled EVERYTHING else out. I have had hundreds of bloodtests run for everything we could think of...and then some. Nothing came back with enough roof of anything else, but there were some things pointing towards Lyme.
Your symptoms DO sound like Lyme. I had a similar reaction to doxy. I was herxing like mad by day 3 at 100mg bid but didn't when he upped it to 200mg bid.
I question myself constantly. I have gone through phases where I convinced myself I didn't have it(and didn't treat it) only to become even sicker.
Ask your PC to run some tests. I often go in under the guise of curiosity..."So Dr. I was doing some reading and I was wondering if you thought xyz sounded similar to what I might be dealing with? Could we perhaps test for these to 'rule them out?' Maybe then we will have a better picture of what is going on." It makes the Dr think its their idea instead of yours. I find that if I go in and act like I know what I am talking about, they get intimidated and shut me down. If I act only moderately intelligent, it goes over better. I only have one Doc who actually listens to me and is willing to read studies/websites/etc and work with me.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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Yes, it does sound like you have Lyme. EM rash, lots of symptoms, ind tests. It's definitely possible that all of your psychiatric issues are related to neuroborelliosis, but also possible that some of them are due to Lyme and others are due to the stress of being sick, not having anyone believe you, etc.
Have you treated for LD at all? Do you trust your Lyme doctor? If you do, I would let him decide your direction for treatment. It's deinitely not too late to treat for LD, and I suspect that with the proper treatment you would improve.
If you don't have a doctor you can trust, I would find one as soon as possible; it makes everything so much easier.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
Oh my gosh, my neuro/psych symptoms were /are the worst! I always said I'd rather have the pain and fatigue any day. At least I can take something to help or rest. But the emotional swings (black moods actually) were the scariest things.
I never had a problem in 50+ years like this until I started getting many other symptoms that were physical and I was diagnosed with Lyme. I'm thinking it may actually be a co-infection rather than my Lyme. I've read a couple of them can be brutal in this respect.
I thought I was losing my mind when I would have emotional swings every 28 days. I went to all kinds of specialists including an OB/GYN. I figured it must be hormone related. Nope. I was told all checked out fine and practically patted on the head. Argh!
After my Lyme diagnosis my LLMD told me bb has a 28 day cycle. Once I started ABX those symptoms started going away until I had them no more. Recently they came back with a vengence along with my other symptoms because of a change in my meds.
It's like my whole personality changes. Really scary stuff. I have to try and stay away from everyone when I get like this. My "filter" seems to be broken and I may say something I regret.
I also get extremely depressed - like a black hole with no way out - absolutely hopeless. Now I know when I do get like that I will be okay in a day or so. It still is very hard to be in that place though.It's like all reasoning goes out the window.
It know was absolutely caused by Lyme or a co-infection. Hang in there!
~ GG
-------------------- The earth is my altar, the sky is my dome, the mind is my garden, the heart is my home, and I'm always at home...
Eden Ahbez, 1908-1995 American Musician, Songwriter and Poet Posts: 4 | From Upper Midwest | Registered: Nov 2009
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