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1329847 tn?1275172734

Does Lyme disease show anything on a CT scan?

Ughhh I am so so so so down. Been struggling with my failing health for 3 months now! I have been in and out of Doctors trying to get to the bottom of the following symptoms:

Off balance when walking
lightheaded/dizzy ALL the time
tingles and numbness in arms/fingers and cheeks
sensitivity to light/blurred vision/halos
can't sleep
anxiety/panic attacks
depression
soreness just under ribs
FATIGUE

I tested positive for initial lyme disease blood test and then with a further test it came out negative
I had a CT scan of the brain and spinal cord which came out clean...
Would lyme show up if it was effecting my brain?
16 Responses
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Avatar universal
YOU NEED A **** LOAD MORE TESTS THAN THAT!!! TRUST ME BEEN THERE DONE THAT.. YOU HAVE TO BE ABRUBT AND FIRM WITH THE DOCTORS DONT LET THEM PUSH YOU AROUND...IF THEY DO DONT PAY EM SIMPLE AS THAT
Helpful - 0
Avatar universal
I know it's hard not to worry, and part of that is Lyme messing with body chemistry.  It happens to a lot of us, like a shadow over what should be a sunny day.  You're not causing it, so don't blame yourself.  My mantra was:  'It's the bugz, it's not me.'  I'd say that over and over till I got bored and went and did something else.  :)   You're not alone in all this, and it WILL go away.  

                  ... it's not you ... it's not you ... it's not you ...
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Avatar universal
I really appreciate it. The one thing that is concerning me is if I do get a negative result. I've read many forums, and read about everything I can on Lyme Disease, and unfortunately, as you were saying, they're not always accurate. I'll keep you updated, and once again, I really appreciate you responding to my post.
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Avatar universal
PS  The usual tests run for Lyme diagnosis are helpful if they are positive, but too often the tests are not accurate and can easily miss true Lyme infections.  Having the tests done is not a bad thing, but unfortunately docs who are flailing around trying to figure out what you might have can miss important data, because the usual tests are just not very accurate for reasons I won't bore you with at this point.

I would have the test, get complete copies, and let us know the detailed results -- we can then tell you what we, current and former Lyme patients, would do next, based on what we have learned the hard way.  We're here!  Send us data.  :)
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Avatar universal
Welcome to MedHelp Lyme --

The post you responded to is now several years old, and I don't recall SickOfTheFog posting recently, so you may not get a response from them.

That said, it's good that you are getting a Lyme test, but if it comes back negative, you could still have Lyme and/or other infections the 'Lyme' ticks often carry.  There is a split in the medical community about how serious Lyme is, how widespread, how to diagnose it, how to treat it, and just about every other aspect of it ... If the doc you are seeing tests you and says you don't have Lyme, I would not assume that is the final word.  

If the test result is negative, say thank you and take a copy of ALL the test results -- make sure you specify that, because docs hate using up toner and copy paper -- and find a doc who really understands Lyme, for a second opinion.  We can help you find a doc who is perhaps more Lyme-savvy, if the current doc turns out not to be on top of things.  

Bottom line is you are ill with something, and Lyme is a candidate -- so don't give up until a competent doc tells you it's not Lyme.  I went through 20 docs before one of them finally ran a Lyme test ... and amazingly it was positive (since many of the standard Lyme tests are lousy).  The doc looked at me very gently and told me that no, I could not possibly have Lyme.  Full stop.

Turns out the doc was all wet, and fortunately (?) I knew someone long ago who had Lyme, so I knew it was serious.  I took a copy of the test results and found a Lyme specialist, who properly diagnosed and treated me.  That was ~ 7 years ago now, and I've been well ever since.  

Whether you have Lyme or not, we don't know -- we're just people on a website -- but we can help you find ways to know whether you have Lyme or not.  Keep us posted, and we'll be glad to help.  
Helpful - 0
Avatar universal
I can understand your situation. I myself am still unclear of what's wrong with me, but I can see no other alternative than Lyme Disease. One day I was working and I felt a little bit off, and then out of nowhere I had this horrendous panic attack. I had no idea what was happening, but I thought I was going to have a seizure or pass out. I didn't have another attack for approximately 8 months, and then this past December I got sick with a nasty chest and head cold. After that, it was all down hill. Every time I ate something, I would have a panic attack. Every time I drank something, I would have a panic attack. I used Vicks nasal decongestant one time and had a panic attack that lasted for almost 6 hours. After that all ended, my joints and muscles were stiff and sore for hours. My eyes are constantly blurry, burning, and trying to readjust after I eat (I can't even look at a TV or computer screen for too long because it hurts my eyes and I feel like I'm going to have another panic attack). I use to feel this constant pressure in my sternum (It's all but subsided). I can't drink alcohol anymore (It felt like my sinuses and head were going to explode). There is constant pressure in my sinuses, forehead, parietal bone, and temporal bone (skull bones by your ear). My ears are constantly ringing, and switching from left to right. I have a staggering gait, am constantly running into something, hate driving now, and my muscles don't respond as well as they use to. I have these numbing sensations going down my arms and legs, as well as cold hands and feet, not to mention marbled palms.  The brain fog was/is still horrible. I can't remember people's name, names of objects, I lose my trend of thought mid-sentence, I forget words and switch words around, I lose my temper on a daily basis (I use to be a very patient person), I'm always anxious and depressed, have thoughts of suicide, and my reading comprehension is down the tube (I have to read and reread passages again and again). My diet is extremely restricted now (I was originally following the Candida diet), and because of that I've lost approximately 25 lbs and have no more energy to do anything...even work. I use to read quite a bit and was a huge outdoors man. I lived on Guam for approximately 3-4 years and was always out doing something by myself or with my friends, but ever since becoming sick, nothing's been the same (I've become somewhat of a hermit). I had to move back to Kansas to live with my parents, and the doctors have been running test after test, but they've still found nothing.

- Kidney enzymes
- Liver enzymes
- ABG (They thought that I may have had "the bends" from diving)
- Full Lipid Profile
- Comprehensive Metabolic Profile
- CBC w/ platelet
- TSH w/ free T4
- Urinalysis
- Lung Capacity Test
- Yeast Infestation Test w/ Clotrimazole
- Emergency room visit where everything turned up normal

Now they want to run a CT of my brain and sinuses. I just want it to end. I want to feel like I use to feel. Granted, I've been taking a candida removal supplement, as well as a probiotic and they've helped minimally, but I still feel worn out (I've heard that there can be an overgrowth of candida, due to a compromised immune system, and I was exhibiting a lot of those characteristics, too. Does anybody know if this is true???). I'm due in to the doctor's on Monday to run the Lyme's test. Wish me luck, cause if this isn't it, I don't know what I'm going to do.
Helpful - 0
Avatar universal
Welcome.  Sorry to hear what you have been going through.  You give a lot of good detail that should be passed along to a doc who can see the whole picture of your history, including bites, symptoms, treatments, and results of treatment so far.

The standard Lyme tests are not very accurate, and a Lyme specialist would know what tests to order.  Being a 'Lyme specialist' doesn't mean just being an infectious disease doctor or other specialty -- it means having an open mind about the limitations of current medical diagnosis and treatment regarding Lyme and other diseases carried by the same ticks.  Sadly, the infectious disease docs are often the most resistant to understanding that Lyme is not a quick and easy cure with a couple weeks of antibiotics, and that there are very often other diseases carried by the same ticks and need different treatment.

So, in your situation I would plan the same things you are planning:  to see a doc, get tested, deal with it.  Unfortunately, the doc/testing/treatment side of Lyme (if you have it) is more complicated than it ought to be.

The first thing I would do is find a Lyme specialist, but otherwise follow the course you lay out in your post above.  If you need help finding a Lyme doc, let us know and we can maybe give you some hints.

Good for you for thinking this through and analyzing the problem.  That's the first step to FIXING it.  Let us know know how you do!

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1954289 tn?1332602519
.I am 39 just to let you know my age.My name is Travis and=
ill tell you my story and you let me know what you think.In 99 i was worki=
ng along highway 1 near =A0Jacksonville Florida and i worked in a heavy woo=
ded area doing underground drilling.I didnt work in the woods but around al=
ot of farms and etc.Around christmas time i went home to Ft Lauderdale Flor=
ida to see my family.I had a really bad what i assumed what i thought was a=
spider bite on my right inner calf.I was purple and puss filled and it rea=
lly hurt.So i finally got up the courage to lance it which i did and it pop=
ped and it felt better so i bandaged it up and put some neosporin on it and=
never gave it another thought.I never had a bullseye around it that i reca=
ll but it left a permanent circular scare that i have till this day.Now i d=
on't remember getting sick at the time =A0but i have had the flu or
colds 10 times since then and quickly got over them i quickly get over all=
colds.In 2001 i was living with my girlfriend and had insomnia for about a=
week and it went away.In 2002 and 2003 i started getting fatigued,not alot=
but just tired all the time.Kinda sluggish feeling and just over tired whi=
ch i blew off as well.In 2008 i moved to Deland Florida from Pittsburgh Pa =
with my dog Savanah.I found her alond a river i was walking by in 2006 and =
she followed me home so i keep her.I started her on K-9 immediatly cause i =
didnt want fleas.I noticed 1 day after i had moved that i had a tick engour=
aged in my leg.I popped it out and went to the emergency room and he gave m=
e antibiotics and that was that and he said he would call with the results =
of my test for lyme disease which came back negative.I did get sick a few m=
onths later with a cold but i quickly got over that as well.In that time i =
did get headaches for a week and they stopped and i was extremely
fatigued at work for a few weeks and i blew that off too.Fast forward to 2=
010.I also had diabetes through this time(first diagnosed in 2005) and i fe=
lt the numbness in my feet was from not taking care of my sugar.Also the ch=
ronic fatigue i attributed to the diabetes as well.I was also tested for =
=A0sleep apnea but didnt get to finish the test process over matters =A0mor=
e important in life at thew time.All through 2010 and 2011 i felt kinda run=
down and i would a few times have episodes where my heart would beat like =
crazy for hours and wouldnt stop but this happened a few times =A0and just =
not myself.Cant say i have had problems with joint pain or arthritis just a=
overall blah felling.Last Saturday i woke up at 4am with my head spinning =
and throwing up and went to the doctors.They said i have labyrnthitis which=
is inflamation of the inner ear.I was given antivert and told i will be be=
tter in 2 weeks or so.I also forgot i have been seeing blurry for about 3
months just here and there and i went to see an optomologist last week and=
he said my eyes retinas and optic nerve look normal and could not explain =
my blurryness.I also have what i can see is ASA(Lyme Disease associated ski=
n condition on my feet) alond with the inner ear problems as well as the bl=
urryness my eyes occasionally.Now i start to add these things up and i can =
come to one conclusion,that i may have lyme diesese and late stage at that.=
I have a alot of symtoms.I am going to the doctors on Weds for my Labyrnthi=
tis and do you think i should show him the scar =A0and the skin condition o=
n my feet and tell him whats going on.Should i demand a blood test for Lyme=
disease and which blood test should i demand.I know i rambled on and on an=
d for this i am sorry.I hope you get over your illness and get on with your=
life and i just wanna know your opinion?I think i should demand a test.I g=
ot a test in 2009 for Lyme but who knows what kinda test they did and
if it was the right 1.I did have a CT done in the ER and he said my brain =
looked perfectly normal so thats a good sign.I guess thats a good sign:
Helpful - 0
Avatar universal
I had a SPECT scan, ordered by my LLMD.  Even the LLMD was impressed how messed up my brain function was.  Don't remember if I had an MRI beforehand.
Helpful - 0
1210011 tn?1281472365
Most LL neurologists will use as SPECT scan with neuro lyme patients to look at brain Function -- how the blood is flowing into your brain.

Most insurance companies require that a MRI be done before a SPECT will be granted. It's my understanding that MRIs and CTs will only show Structural issues (i.e. lesions).

Although something structural may interfere with the Function of any organ, the SPECT cuts to the chase. It's used to look at blood flow whether it's our brain, heart or any organ. Decreased bloodflow can indicate damage from a stroke or seizure for instance.

My sister had decreased blow flow to her brain show up on her SPECT and that coupled with poor scoring on NCT(neuro-cognitive testing), along with everything else = she was granted disability. Post-IV abx she has functionally improved though.

It's more useful, as we're concerned with function. It's entirely possible that some ppl could very well have lesions but not be as functionally impaired as those where lesions don't show up on a MRI (my sister had no lesions show up).
Helpful - 0
Avatar universal
wow. your list of symptoms is like looking in a mirror for me. I had everyone of those symptoms.

I had neurological symptoms just like you. I had 1 CT Scan and 2 MRI's no legions where found on my scans, but yet all my symptoms were pointing to neurological issues.

from what my doctor told me, is he said no permenant damage has been found on my scans, but that doesnt mean its not affecting your brain function.

Helpful - 0
Avatar universal
Actually wonko, you don't always have a positive test result. I know a person who had a huge huge bull's eye rash & was tested 4 times.. had all the symptoms...but the tests always came back negative.
I don't know what kind of tests they ran on them.... but luckily there was a doctor in their area, who would treat them for Lyme disease anyways.

I'd go there too, but again, it's very expensive just to become new patient and we're low on funds now.
Helpful - 0
Avatar universal
I'm sorry this happend to ya. I'm almost positive I've got Lyme Disease. Had the rash, then i also noticed numbness in my fingers, when I'd wake up, then muscle aches, and now severe joint pain, like hip, knee & really bad ankle pain (my ankles never hurt before now) then starting to get diahrrea, stomach aches, then lately fatigue
.. now different joints are starting to hurt, like my elbow

Is this all classic of Lyme Disease?
We got Deer running in our yard all the time though we live in an urban area, but there's woods nearby.
  I think I just saw a deer tick running on my PILLOW! It was the size of a sesame seed.

I killed it, and I'm going to take a photo of it.
  Can you download photos here?  We have a cat that goes outside and comes into our bedroom.
  The problem is this. We live in North Carolina and there is this STUPID law that says it's totally legal to feed any kind of wildlife, including deer, bear, you name it!
  This is insanity. Yet, none of the doctors & even some of the veterinarians in the area, will admit it's a definite problem here.
  They all claim it's extremely RARE to get Lyme Disease in these parts, but I know of a lady who got it in our town and I've got friends who's pets got it and they nearly lost their pets to it!
  There's people in our area that are constantly beckoning deer to their yards.

   The sad thing is the police won't do a thing about it either. You can get killed having a deer run into your car! Why would the police want to promote that kind of activity? Having people lure deer to their yards, just because they enjoyed seeing them in their yards, when it poses so much DANGER to others?

  Some poor woman just had her little Yorkshire terrier attacked and killed by a wild bear just the other day when she was outside walking him near the VA hospital!

Anyway.. it's just hard to get treatment here, and so expensive to boot! I contacted some infectious disease place and it was going to cost at least $400 just to even see the doctor, let alone get treated.
And if the test came back negative, then all that would go to waste, for they'd claim, Oh, you don't have it, but I DID see that bull's eye rash late this summer! I wish I took a photo of it.

How does one get treated for Lyme Disease inexpensively in the state of North Carolina?
I mean, good god, all you need to take is antibiotics.

  Where do you find, what you called an LLMD btw?

Thanks people. Please don't flame me.. I've gone thru enough already.
Helpful - 0
428506 tn?1296557399
I agree with the above.  If you had ANY positive serology, and no other diagnosis fits, don't give up on Lyme yet.  And yes, you may need to be proactive about seeking a Lyme doctor who uses more broad diagnostic criteria.  The risk of this is fairly low, as Lyme is treated with antibiotics.  If you have no response to it, then at least you've only ventured little.

I don't think that Lyme would typically show up on CT scans, though I'm not medically trained.  MRI's can show certain damage (lesions or plaques) that can occur (but do not always) with Lyme.  And there is a separate imaging called SPECT that can show blood flow problems in patients with Lyme.  But I don't think anything from Lyme would show up on CT.

All of the above advice is right on, I'm just chiming in too out of agreement.  It is encouraging that you've only been struggling for 3 months.  (Note I'm not downplaying how awful it must be, I'm sure it's no picnic!)  But the faster Lyme is treated, the faster and more effective treatment is.  

Some people go years/decades before being diagnosed, and their road to recovery can be uncertain.  If you were relatively healthy before all of this and have only been infected for a few months, your prospects for recovery are good.  But first, you need to find an LLMD who will re-evaluate you and treat as needed.  So that's what I would do.

Good luck & take care.

Helpful - 0
Avatar universal
Sorry to hear you are having a rough time.

Sometimes Lyme patients show lesions on CT scans, which may cause the doctors to think of other diagnoses, but to my understanding, if your CT scans are clean, that does not rule out Lyme.  In other words, no, I don't think you need anything bad to show up on a CT scan to prove that you have Lyme.

You mention having two blood tests for Lyme.  That is the usual way, along with consideration of your physical symptoms, that MDs are able to diagnose Lyme.  Your list of symptoms could all be associated with Lyme, I think, but I'm not a doctor, so don't rely on me for a diagnosis!

There is a split in the medical community about how to diagnosis Lyme:  many MDs believe that Lyme is hard to get and easy to cure, while some MDs (casually called in places like this website 'LLMDs', or Lyme-Literate MDs) take Lyme more seriously and treat it more aggressively.

The tests used by many non-LLMDs are not very accurate and do not give much information, and non-LLMDs do not respect the tests used by LLMDs.  In addition, LLMDs and non-LLMDs do not interpret test results and symptoms in the same ways, which means non-LLMDs often fail to diagnose patients who have Lyme.

My recommendation would be to find an LLMD and take a copy of your test results to him/her.  An LLMD would probably run additional tests, but it's often useful for them to see the previous test, no matter how incomplete.  

I see you are in Brooklyn.  There is an excellent Lyme program on the Upper West Side of Manhattan at Columbia Univ., and if they can't see you, perhaps they can recommend an MD near you.  The website is Columbia-Lyme [dot] org.

If I were in your situation, that is what I would do.  Best wishes, and let us know how it goes.
Helpful - 0
Avatar universal
Hi,

I'm sorry you're having to deal with so much.  It's good your doc at least checked for lyme.  What you tested positive for was the Elisa test which if positive means there is an active infection.  The western blot is what you tested negative on. There are only a few qualified tick-borne labs that can accurately detect antibodies in your blood.  A couple of them to lookup are Clongen and igenex.  A few questions to ask:

Do you remember any illness, bite or rash prior to your symptoms?  This would make the likelihood of lyme more probable.  Even if you don't remember any of these, there is still a possibility you have lyme.  

To answer your question, no, lyme related abnormalities of the brain will not show up in a CT scan.  What they are looking for is lesions.  The first thing anybody thinks of when they hear lesions on the brain is MS.  However, they can actually be caused by a whole range of diseases including lyme, migraines vascultis or maybe you were just born with them.  You should ask your primary doctor for an MRI with and without contrast to see if there are any ACTIVE lesions in your brain. I don't know why docs love CT scans so much.  It must be because they are much quicker than MRI's.  

My main symptoms (and mine started 6 months ago)  include Panic attacks and lightheadedness.  It is definitely weird to go from perfectly healthy to all of these strange symptoms.  The worst part is not knowing what is causing them.

I hope you feel better soon and please seek out a qualified doctor to diagnose whether or not you have lyme. You may want to look up the term LLMD.    



  
Helpful - 0
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