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anxiety as first symptom

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Posted 12/8/2008 2:38 PM (GMT -6)
i am wondering if anyone has had anxiety and panic attacks as the FIRST symptom of lyme's?

i am not diagnosed with lyme's, but it is not really looking like anything else could possibly going on but lyme's. i had been diagnosed with postural orthostatic tachycardia syndrome - a type of autonomic nervous system dysfunction - for the last eight months. i finally was able to visit a POTS specialist, who told me that i definitely don't have POTS. definitely autonomic nervous system dysfunction, but not POTS. other doctors have tried to diagnose me with CFS, but i don't have fatigue.
when i research my myriad of symptoms, the only thing that fits is lyme's. i just don't know where and when i would have gotten it.
i got sick about three weeks after returning from living in west africa for eight months. i have not heard of lyme being reported there ever, but i was definitely bitten by a tick. i returned home to maryland, in a very tick-rich area, where it is possible i could have been bitten.
however, my first symptom was anxiety and flushing. a lot of anxiety and panic attacks, and a lot of facial flushing. i have never had a history of either. then came rapid heart beats, swollen lymph nodes, shortness of breath. later followed swollen and painful finger joints. then lots of GI issues, random pains, low body temperature, head pressure, crippling panic attacks, vision problems, and many more.

i am 25 years old, and had been in perfect health, very active and outdoorsy, until this began. i have been sick for two years, and doctors don't know what to do with me anymore.

i am pretty cynical when it comes to seeing doctors at this point, but am interested in seeing a lyme specialist. i am curious, however, if others have experienced anxiety as the first symptom. the onset of my condition seems a bit atypical for lyme's disease, and i really don't have it in me to go see another specialist if this is pretty certain to not be lyme's.
Posted 12/8/2008 3:25 PM (GMT -6)

hey tiger,

Considering one of the main places the lyme bacteria goes is your brain, it seems reasonable anxiety could be a "first" symptom.  My "first" symptoms was headaches.  And I spent months with docs treating me for headaches. 

If your "myriad of symptoms" equals lyme then you are like most if not all of the rest of us.  You even know you got bit by a tick and you live and play in the woods of africa and maryland. 

Part of lyme disease is constantly wondering if you have it, I think.  Pursue it with passion and you will beat it.

Chief

Posted 12/8/2008 3:25 PM (GMT -6)
My first symptoms were severe depression and a swollen right knee.  I had no idea the two were related. 

Since I have depression, which has ALWAYS been manageable with medication and has NEVER caused me to lose a day of work, all of the doctors jumped on the "depression" diagnosis.  They called it "breakthrough" depression.  I was put on every anti-depressant and anti-psychotic drug they could think of.... NOTHING worked.  And the whole time my knee is getting bigger and bigger and all of my joints started to hurt.  I was so fatigued that one time I spent 6 straight days in bed.... now I have insomnia that horse tranquilizers couldn't kill.  I started breaking out in rashes, I kept falling down the stairs, I couldn't walk my dog, I could barely walk... I don't think I could walk a straight line now.  I thought that I was getting ready to cross that very fine line into insanity... I watched my world, my body... everything crumble... and there wasn't anything more I could do.  The more I searched for answers, the crazier I seemed.

I would find a Lyme disease doctor and get tested immediately. 

Posted 12/8/2008 4:00 PM (GMT -6)
wow, it's amazing how no two stories are alike. i've gotten into the same mindset as my doctors, which is i need to fit into a perfect little box in order to be diagnosable. i can't find a home with any disease/disorder, so i just feel like a weirdo. with all my symptoms, i actually went through several months convinced i made myself crazy and this was all in my head. tests after tests kept coming back normal and i actually became more anxious believing that i had some kind of psychotic disease that made me believe all these things were wrong with me.
fortunately, i have since learned, and there is no one in the world who can't convince me something is very wrong. a 25 year old, highly educated, previous collegiate athlete doesn't just suddenly have all these strange problems from "stress," which wasn't even present in my life at the time.

i'm going to see a lyme specialist. sounds like it is worth it!!!

how long did it take you guys to get a dignosis?
Posted 12/8/2008 4:35 PM (GMT -6)
Sorry to hear your dealing with all of this. My illness began with anxiety/panic and visual and cognitive issues. Then the physical stuff and fatigue progressively got worse.

Anxiety and Panic issues are symptoms of bartonella as well as lyme. So make sure you see a knowledgable dr who knows what to test you for.

Im 25 too by the way. Hope you get to see a good doctor soon and get on the right track. Good luck.

Joe
Posted 12/8/2008 4:58 PM (GMT -6)

gracietiger said...

how long did it take you guys to get a dignosis?

I had been sick 13 months before I went to an orthopaedic doctor for my swollen knee.  While researching "swollen knee" on the internet I stumbled across Lyme disease.  I had almost every symptom.  So when I went to the orthopaedic doctor I asked for a LD test.... and it came back positive.  It took me 4 more months to find a doctor willing to write me the proverbial 200 mg/day of oral doxycicline.... I had been sick for 17 months and they wrote a script for a bottle of doxycicline............... shakehead shocked   rolleyes   smhair   rolleyes   shocked shakehead

Posted 12/8/2008 6:17 PM (GMT -6)
Gracietiger- one of my first symptoms of lyme was POTS_ saw Dr K, who is a POTS specialist at Union Memorial, and doesn't really believe in lyme.

My second symptom was severe anxiety-probably from bartonella. If you live around baltimore, I can give you the name of my LLMD

Posted 12/8/2008 6:47 PM (GMT -6)
hi beths, you were diagnosed with POTS at first too? Do you have POTS, along with lyme? Or did they rule out POTS?

i have all the symptoms of POTS, except for tachycardia upon standing. Hence, no POTS. It seems most doctors don't believe in lyme disease, other than the ones who specialize in it. I spent a year seeking a diagnosis, and was so relieved to finally have the POTS diagnosis. But the more I learned about it, the more I felt like I didn't have it.
So now I'm left with some kind of autonomic dysfunction, but no diagnosis. Back to square one.

Thanks for your offer for your LLMD. I'm actually in California now. Which is going to make it much more difficult to find a LLMD, I think, but I will. Especially upon hearing others have had panic/anxiety as their first symptoms. My doctor said lyme's disease always progresses from "flu-ish" feelings to joint pain.

Thanks for the bartonella suggestions, guys. I'm going to look into that more.
Posted 12/8/2008 7:37 PM (GMT -6)
my first symptoms were anxiety and panic attacks. i would wake up in the morning with dread and panic. little things would set off panic.
next at some point came a bright red oval rash, muscle and neck pain, severe fatigue, weakness, other cognitive symptoms....all of these symptoms came on within about a months time.
Posted 12/9/2008 9:52 AM (GMT -6)
Yes. My very first symptoms were anxiety and panic attacks. I was 23 and in great health (so I thought) when I started having rapid heart racing, panic attacks, and anxiety out of no where. Literally started from nothing. I spent over a year trying to figure out why I was having these panic attacks. 2 years later I was diagnosed with lyme disease and believe to have had it for at least 5 years. Anxiety has always been my most major issue with lyme disease throughout my treatment and something I still have to deal with now, but nothing like how it used to be.
Posted 12/9/2008 10:27 AM (GMT -6)
jeminij - that is exactly how my "illness" (lymes?) began. i can't believe i haven't further pursued lyme because my doc said anxiety wouldn't be the first symptom i would notice.
how long have you been receiving treatment?
i am going on two years of having this unusual illness, having had about three diagnoses so far, all later then retracted.
i need a llmd asap.
Posted 12/9/2008 10:59 AM (GMT -6)
Doctor's don't always know everything. I was told I had emotional problems and to seek help for that. I wanted to kill them because by then I knew something else was going on, I just didn't know what. I also tested negative for lyme over a 2 year period so they ruled that out right away on me and wanted to put me on antidepressants. I had to be my own advocate. I didn't take the meds because I knew that I wouldn't be feeling that way if nothing else was going on. A week prior to my first panic attack, I spent 10 days in Europe traveling and having the time of the my life..no anxiety, no fears, nothing to bother me at all. Then boom, a week later, panic attacks started and I got worse over those 2 years.

I was on meds for 2 1/2 years before I got well. I was bed ridden by the time I got diagnosed and in very bad shape so it took a long time for me to get better, but I eventually did and once I was well and off abx, I did go to therapy for 6 months to deal with the left over anxiety. For being sick for those years, I stopped driving, going out of the house, pretty much doing anything "normal" so I had to learn to do that all over again. But after some therapy for the anxiety and just doing more and more, the anxiety eventually went away and I got back to a normal life.

I am now 33 and have home some recurring symptoms. I just a baby 9 months ago and my body went through a lot with the pregnancy so I am dealing with some lyme again and anxiety does return for me from time to time, but I think it is just something I deal with now. I don't have panic attacks and haven't in many many years. I get general anxiety about getting sick again sometimes, but for the most part, it does go away. I also never took meds for it and I know they help a lot of people with lyme and anxiety. For me, I just don't like to take meds unless I absolutely have to.

Don't accept that anxiety and panic aren't first signs of lyme. They surely are and were for me.
Posted 12/9/2008 12:05 PM (GMT -6)
I also had panic and anxiety as some of my first symptoms, along with a mild upset stomach that did not go away. Followed by swollen lymph nodes in my armpits.

It is nearly impossible to find a lyme story that is identical. Each tick can carry so many different organisms that are transmitted via the bite. Think of it like a bag of skittles. You pour some of them into your hand. Can you guarantee how many different colors you will see and the exact number of each. Impossible. Ticks are 100% proven to carry other infections just as dangerous as lyme. Things like Lyme, Bartonella, Babesia, Ehrlichia, Mycoplamsa, Parasites, Rocky mountain spotted fever, tulameria, viruses, etc. I'm sure there are some organisms that haven't even been identified yet. Plus there are so many different species of each. Who knows how many lyme species are roaming around. Possibly 20 or more species of bartonella and 15 or more species of babesia. So you throw a handful of these organisms into the blood stream, and you immune system will not know what to do. This should explain why all the stories have their variations. It is like the unlucky lottery.

Posted 12/9/2008 12:29 PM (GMT -6)
thanks for sharing jeminij-
your story sounds similar to mine. prior to my sudden onset of panic attacks, then tachycardia, then tons more symptoms, i was traveling in west africa feeling the healthiest ever, spontaneous, no fears. i was 23. boy did my life change really quickly. it's been almost two years since becoming sick, and i've just lost so much in my life. i never imagined i'd be in these shoes right now.
i was tested twice for lyme's, both negative. but it is definitely time to pursue a specialist, as i am learning how common the negative tests are.
hopefully i will get some answers soon!
Posted 12/9/2008 12:31 PM (GMT -6)
phsinvert - thanks for the analogy! definitely makes sense. i keep trying to find the "perfect" fit for me and my symptoms, but you're right, there is no way that everyone responds the same.
Posted 12/9/2008 6:39 PM (GMT -6)
Jeminij,

Your story sounds EXACTLY like mine. I literally could have wrote that word for word. I'm glad you're feeling better!
Posted 12/12/2008 4:24 PM (GMT -6)
It is amazing how much we all go through the same thing. I wish I had a site like this 10 years ago when I was diagnosed. I literally thought they would be naming an illness after me when I was gone because I didn't know of anyone else feeling the same way. I lost a lot of years of my life as well. I was so young and thought it was all over for me. But with treatment and the help of my family, I did get well and now that I have a wonderful family of my own, it was worth all the hell I went through then and on occasion still do. I don't think I will ever be exactly the same as I was prior to lyme. I hate to fly now due to my anxiety (I have done it, but don't like it). I don't travel like I used to and it is something I will always carry with me, but you can get your normal life back and do all the things you did pre-lyme and this time you will appreciat it that much more.
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