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I am really scared
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I am really scared

I was recently diagnosed with lyme disease.  I aparantly have the chronic form because I have had symptoms off and on for the past 10 years and remember being bitten by ticks as a child growing up in the woods of Alabama.  Three years ago I was also diagnosed with dysautonomia with unclear etiology.  I have been on IV abx for the past five months and just started on orals.  However, I feel worse now than I did at my worst two years ago.  My symptoms are:   severe light sensitivity, severe sound sensitivity, sleep paralysis, limbs jerking,burning skin sensations, low body temp., constant chills w/o fever and gooseflesh, muscle weakness, severe low bp, supine tachycardia and worsening when standing, heat intolerence, adrenaline surges, blood pooling in legs and feet, nausea, migraines.  I have had all of these symptoms at some point or another and I always slowly get past them to a certain degree but for the past month I have had all of them and they are not letting up.  Last night my heart stayed at 120 all night while I was in bed trying to sleep and every time I moved I broke out in chills and gooseflesh and my skin was burning.  I have had my heart checked and the structure is fine, just sinus tachycardia w/ low bp.  My question is: what tests should I ask my dr to run immediately to rule out anything serious that may have gotten worse or changed.  Again, I have never had all of these symptoms happen all at once and for so long.  By the way, I have been off all meds for the past 6 weeks to give my body a little rest.  I am not on any other meds right now.  ANA is neg, cbc & cmp normal too.  Thank you
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If you are having symptoms despite appropriate treatment for Lyme disease, you may want to look at other conditions.  

Possibilities can include various endocrine disorders - such as thyroid, adrenal, or cortisol problems.  The symptoms of sleep paralysis and limbs jerking can be indicative of some sleep disorders.  Nausea, headaches and light sensitivity can be typical of migraines.

You can consider a variety of blood tests (i.e. CoSyntropin stimulation test, cortisol testing, thyroid testing) to evaluate for endocrine disorders.  A sleep study can be considered to evaluate for any sleep disorders.  For the neurological symptoms, you can consider a referral to a neurologist.  Imaging with an MRI and MRA of the brain would be a good start to evaluate this avenue.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b
11 Comments
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Avatar_n_tn
tidegal, very glad to see your post.  I live in Birmingham, and I have had very strange symptoms such as nonstop headache, episodes of non-typical vertigo, and confusion, and odd tingling sensation in my lower back and elsewhere, persistant since April of this year (it really began 3-4 years ago but it was all very mild and I never saw a doctor).   After $30,000 worth of testing at UAB I still am no closer to an answer (I too was tested for Lyme antibody).  

May I ask how your doctor diagnosed you with Lyme...was the antibody blood test positive or was it simply based upon your symptoms?  Or did you have a spinal tap?

Also May I ask what area of Alabama you grewup in?
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Avatar_n_tn
also with the surges of adreneline and racing heart and severe headaches, I would have first though adrenal gland tumor  but the low bp would contradict this since that normally causes very high BP.  

I am most interested in how your doctor reached the conclusion you indeed have Lyme?
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Avatar_n_tn
I grew up in Blountsville, which is between Hunstville & B'ham.  I moved to GA in 1996.  I live in Carrollton which is about 30 mins over the GA/AL line. My lyme diagnosis was confirmed by a blood test through Igenex in California.  They are a tick-borne specialty lab.  If you call them they will send you a testing kit in the mail along with drawing & shipping instructions.  Their number is 800-832-3200.  I tested positive on the ELISA test with a very high titer for lyme and my western blot was equivocal with only two bands showing.  However this is a very old and unreliable test.  My test results were confirmed positive by Igenex in my IGG & IGM and also in urine assays. I have been progressively worse over the past four years.  I was also diagnosed with dysautonomia, a disorder of the autonomic nervous system.  Lyme can cause dysautonomia and so many other things.  You can email me any time at ***@****.

take care,
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Avatar_m_tn
Sleep Paralysis is common and usually not associated with any major medical problem and is a benign yet terrifying condition. Also some of your symptoms sound like panic attacks or general anxiety.
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Avatar_n_tn
Panic and anxiety is not a problem for me.  I have captured symptoms of tachy while relaxed and watching a movie and in other peaceful situations. It's time for people and doctor's to stop blowing off symptoms and labeling everyone "crazy" when they don't have and want to take the time to get to the root of the problem!!!
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Avatar_n_tn
Panic and anxiety is not a problem for me. I have captured symptoms of tachy while relaxed and watching a movie and in other peaceful situations. It's time for people and doctor's to stop blowing off symptoms and labeling everyone "crazy" when they don't have and want to take the time to get to the root of the problem!!!



Just to let you all know, I AGREE WITH THIS STATEMENT 110% and I know where she is coming from!
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Avatar_m_tn
Well I will say that panic just means your body releases addreline and hormones like epinephrine when it is not needed. Panic attacks can come out of the blue and people can find no panic trigger in their lives to cause it.

People with panic disorder are known to have panic attacks during sleep and, sleep right through them. So the disorder is not solely caused by your thoughts but by an overly sensitive fight or flight respone.

*I am not a doctor but jsut giving you my advice*

Like the doctor said seeing an endocrine specialist would probably help.

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Avatar_n_tn
Been there, done that.  Epinepherine levels are fine!
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Avatar_m_tn
It may be a long shot but have you had a heavy metal poisoning test. (thalium, arsenic, mercury, lead etc) Some of your symptoms could be caused by this. Its a long shot but it may help.

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Avatar_n_tn
I will check in to that.  Thanks!!
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Avatar_n_tn
I've had lymes for nine years.  If you'll scroll down to head pressure, or whatever...you can read my post.  I'd love to be able to help you.  If what I've said touches you at all, write here, and I'll respond.  I'm an old hand at lymes.  And at being terrified from time to time.
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