I'm in the process of seeking out a LLMD, but my concern is that Lyme may not be the source of my problem/s. And given how hard it is to diagnose, I'm looking for some opinions on my ailments, just to gauge how far down the rabbit hole I should go.
I'll post a brief of what's been going on, and a longer explanation for those that feel like reading. Thanks for your time, guys!
By the way, I'm a 24 year old male in otherwise fine health (a bit overweight and out of shape, but nothing like being obese. I wear L shirts and size 36 pants, haha...which I think is alright, considering I'm 6'3.)
SHORT:
-End of Aug.: Random, sharp headaches from time to time (odd, because I never get headaches).
-Early Sept. through Mid Oct.: Strong pressure in my head, in no specific region. Sharp headaches still occurring from time to time. Feeling of being in a constant daze, which I've only recently identified as "depersonalization". Dizziness/vertigo a bit. Light sensitivity and even sound sensitivity when the dizziness and depersonalization are real bad.
-Mid Oct.: Pressure subsides entirely, headaches still sharp but rare. Depersonalization still happening. Then, panic attacks and sharp mood swings, including DEPRESSION, DREAD/FEAR in general, HOPELESSNESS, ANXIETY. All of this put me out of commission for a week. Nothing to cause the anxiety, and no prior history of it (or those other symptoms). I'm known to be a VERY laid back guy!
-End of Oct. till Present: Panic attacks go away out of no where (thanks to a week of Xanax), but nervous/depressed/hopeless mood swings still occur. Dizziness and depersonalization still around (and very in intensities frequently, but ever-present). Same goes for the light/sound sensitivity.
Synopsis: I've been on meds for false diagnosis of sinusitis, including amoxicillin, prednisone (which one doctor thought triggered the panic attacks during that "hell week"), but no solution yet. The major issue of it all is the depersonalization, but also the dizziness and mood swings.
I've been to 2 internal medicine doctors (one who thought i was overreacting or have an anxiety, and another who is great -- i'll see him again in a week, and he'll probably recommend me to a university medical school neurologist).
I've seen one local neurologist, who didn't do much but a lyme blood test (negative).
I've also seen 3 ER and 2 clinical doctors. They did more blood work, took a brain CT and a brain MRI, all of which turned out just fine.
So that's where I'm at.
LONG:
During the last few weeks of August, I would get some sudden, sharp headaches here and there, that would last no more than a minute. This was odd to me, since I was never one to ever really get headaches. But of course, I dismissed it (I'm young, I'm relatively healthy, I figured "whatever".)
Then at the end of August (the Friday before Labor Day), I woke up to strong pressure in my head. It was coming from every which way, but primarily from my temples. I go to work and realize I'm having trouble concentrating. This is exacerbated when I'm put on the spot to solve an issue, which normally wouldn't have been a problem. I felt dizzy, rushed, etc. I realized at that point, I felt like I was in a "daze".
So I went to the ER, was diagnosed with sinusitis, and spent 10 days on Amoxicillin. No change. I started to have some sharp headaches again in no particular location in my head. I go back to the ER for a CAT scan, and all was clear. They give me migraine meds.
No change again until October, when I go to a clinic. This time, those sharp pains have centered at the back-right side of my head/neck region. Suddenly though, the pressure was gone! So I figured it was a good time to go to the clinic. I was still in a daze. I was put on Prednisone, thinking it was the tail end of a nasty sinus infection. That was a Wednesday.
Come Sunday night, no huge change still, I go to bed. I wake up at 2am with my heart pounding and my mind racing 100 miles a minute. It took my about 2 hours just to calm down (I would later find out I had a panic attack.) I was so shaky, that I was turning on every light in every room I would go through, making a path to my living room. I finally chilled out enough to go to an ER. They didn't think much of it, but given my neck was still sore, they recommended me to a neurologist. And the trigger happy ER doc gave me an occipital nerve block to see if that would change anything. It left me with an even sorer neck and numbness.
So I go to sleep around noon, and wake up in the evening with similar panicked symptoms. I figure, "heck with this!", so I hop in my car and drive 4 hours to my mom's place (I recently moved for work). I spend the week at my mom's, missing work the entire week. I lay in bed and have a rush of "crazy" emotions go through my head. For 2 hours, I would be EXTREMELY depressed. For another two hours, I'd dread everything! Then for another two hours, I'd be really excited and happy.
This went on and on the whole week. I tried going back to my apartment a number of times, but freaked out on the drive back and had to turn back. My old doc put me on Xanax, which helped calm me down. I stopped taking the 3-week dose after 4 or 5 days (I don't like taking meds), and I haven't been panicking since.
My new doctor where I just moved suggested I have an anxiety disorder, but I really doubt it. I've always been a very laid back guy (both a personal opinion and the opinion of others.) I tried to rack my brain all I could to see if maybe this was the case, but I've come up with no indication of it. Granted, no matter how thoughtful any of us are, we can miss something. But I honestly would be shocked if there was something "bothering me" enough to do all this.
So that's where I'm at now. I still get those random sharp headaches at times, but the pressure has stayed away. The biggest problem however, is this "daze" feeling. I'm not a fan of self-diagnosis, but I've read up on something called "Depersonalization", and that describes my feeling of things to a tee. I also get depressed a bit now out of the blue, but it goes pretty quick. Unfortunately, I often get a feeling of "hopelessness" or "pointlessness" to everything. From what I've read though, that's a side effect of depersonalization. Thankfully, no thoughts of suicide.
I went to a local neurologist, but wasn't very impressed. My old doctor back at my mom's place will see me again in a week or two, and he's really sharp and on things. He'll likely recommend me to a neurologist at a medical school soon in the future. During this whole time, I had a CAT scan, an MRI, and three blood tests. All turned out fine (including tests of Lyme). But given how often I do things outdoors/in the woods, and how many times I've picked ticks off of me, I really think it's still a possibility I have this disease.
In fact, thinking over the past year and a half or so, I do think there have been times that I felt "out of it", but chalked it up to a lack of physical exercise, and doing too many "loner activities" (ie. guitar playing, song writing, book reading) instead of hanging out with friends more often than I could. I wonder if it is Lyme (or even if it isn't), if this could have all started much longer ago, before my emotions went haywire!
Posted by Gahagan (Member # 21194) on :
I don't know if you have Lyme or not, but if you do you should absolutely not take any steroids (Prednisone). My LLMD told me "NO STEROIDS EXCEPT TO SAVE YOUR LIFE!"
Steroids make Lyme symptoms much worse.
Posted by blueblitz (Member # 23188) on :
Wow. Would have been good to know!
I was pretty desperate though. Before this all started happening, I wouldn't take so much as Tylenol for a freakin' cold!
I know this is pretty typical, but in the past 3 months, I've accumulated about 12 prescriptions in my medicine cabinet (a lot of which I started taking, and stopped, when my good sense knocked me in the head saying "These pain meds WON'T solve the problem!")
Posted by sapphire101 (Member # 6638) on :
I don't know whether you have lyme or not but this sounds a lot like my husband when he first got sick with lyme. His wasn't the typical lyme symptoms you would expect.
If I were you I would get tested through Igenex for lyme. The tests you have done at your dr's office are very unreliable. There's way too many false negatives. Igenex testing is much more reliable.
Connie
Posted by Lymetoo (Member # 743) on :
Definitely try Igenex for a REAL test.. Neuros will do NOTHING for Lyme.
Find an LLMD by going to Seeking a Doctor here and someone will help you find a dr!!
Welcome... oh, and ditto about the steroids. They may have set off your latent Lyme.
Posted by Taximom (Member # 23176) on :
In addition to Lyme, you should look up B12 deficiency, which can be amajor cause of headaches. Doctors are clueless on this one, because they think that serum levels of 200 are just fine, when every B12 site I've ever seen says that that is just the threshold for pernicious anemia. Levels under 650 can cause all kinds of neuro symptoms.
You might also google "neurological celiac." People with celiac disease or gluten intolerance often have major headaches, depression, panic attacks, mood swings, etc. It is even strongly linked with bipolar disorder.
It is possible to have gluten intolerance and even full-blown celiac disease WITHOUT having intestinal symptoms. Strange, but true.
Lyme can actually CAUSE gluten intolerance. Or you could have gluten intolerance without having Lyme.
And celiac can cause vitamin deficiencies (including B12 deficiency). So can being on acid-blockers for long-term--you need the acid to absorb the B12 in your vitamin pill (if you take vitamins). If you don't take vitamins, being a vegetarian, especially a vegan, can cause major B12 deficiency, as the only food source is red meat. (Sorry, cows! )
I would think that you might try ruling some or all of these out before ruling out Lyme, unless you have reason (a tick bite or a rash or both) to believe that Lyme is a strong possibility.
But I am relatively ignorant about Lyme. Others here know much more!
Posted by Lymeorsomething (Member # 16359) on :
How long were you on Amoxy and at what dosage?
Posted by coltman (Member # 21272) on :
Could be ****load of different things (endocrine problems for one -which may or may not be caused by chronic infection). For lyme get igenex panel .
Check heavy metals, CPN , viral infection (EBV,CMV etc ). b12 and magnesium levels
IMHO psych diagnosis are bullcrap excuses to put you on psych meds for life. Which will do nothing good for you mostly and have potential to screw things up ever more
Posted by blueblitz (Member # 23188) on :
500mg Amox pills, 3x a day, for 10 days, and I finished the whole dose. I was put on this early on (less than a week into having the symptoms.)
Of course, the symptoms have changed and become varied over time.
The streak of panic attacks (lasting during one week) was out of the blue, and gone just as quick. As I mentioned though, I've had nervousness, depression, anxiety, dread, and hopelessness than have drifted in and out since. Only at minor levels though.
The strange thing, is that there are no thoughts to back these bad feelings. And when they finally go away, I'll flood my mind with depressing/anxious thoughts to see if I can trigger those emotions again, just out of curiousity. And I never can! I'm just back to normal when they go away (plain old, solid-as-a-rock blueblitz.)
But besides those misdiagnoses, I haven't had any further action. The next step is seeing my hometown doc in a week and a half. He's partially retired and sharp as a rock. Fights ailments like his life depends on it, and would never suggest I was just making things up and overreacting (as other doctors have since.)
The strange thing about the primary symptoms (the three primary ones being: varrying levels of depersonalization, dizziness, and tiredness regardless of how much sleep I get) is that for a while now...as long as two years, I've sorta felt "off". More tired than usual, and a bit out of it. But I just always assumed it was from lack of exercise (especially since these symptoms were so minor at the time that I could dismiss them as nothing.) It makes me wonder if whatever it is I have (Lyme or not) has been going on for a while now...
I also don't want to rule out anything (B12), but I eat a lot of red meat (too much). Always something to look into. I'm just trying to draw up a battle plan! Posted by Pinelady (Member # 18524) on :
I would also get thyroid checked. Many lyme
patients can have thyroid problems and be over
active or underactive. Most are underactive, but
what you describe is over active symptoms and can
be missed. I have a cousin who made numerous ER
visits/doc visits and was sent home each time to
die she thought. Then a dentist figured it out
and she had to have it removed before it killed
her. Just a thought.
Posted by blueblitz (Member # 23188) on :
You know, my hometown doc recommend the Thyroid be checked, but I never thought anything of it. But I'm pretty the last blood test I had done checked it. I know my grandma has had Thyroid disease for years, but I don't know if it runs in the family (She's 90 though and still doing great -- hopefully that runs in the family too, haha!)
Posted by Pinelady (Member # 18524) on :
Yes it does. My endo told my daughter she has to watch it because she has a good chance to see it show up.
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