Does anyone know of a brain scan that is able to detect small amounts of damage to the brain? I thought I've read something about a SPECT? scan and a few others.
The reason I ask is because of how different and odd I feel. Like I'm a "retarded" version of myself... I don't interpret or even feel emotions the same, I act and feel childish, I can't slow my mind down and have any patience, I can't think through problems and instead just horribly stressed out.
I know that there are neurological effects of lyme, but this feels like it must be something more substantial. Of course, the round of lyme and what was likely meningitis are suspects in my opinion and I'd like to see if anything could be observed.
thanks, me Posted by onbam (Member # 23758) on :
A SPECT is the most likely to pick up problems from Lyme, but they're expensive and hard to get, I think. An MRI will show gross structural abnormalities/lesions (like if your Lyme has given you MS), but many have these come back normal.
Hang in there--this gets better!
Posted by thehause (Member # 21237) on :
Thanks... I've been being treated w/ ABX for over a year. I wonder if I'm as good as I'm going to get and if maybe this is just my "new normal". I feel like another person.
Posted by IckyTicky (Member # 21466) on :
It took me almost two years to get back to feeling like I had my brain back to myself. I use to could not concentrate, I over reacted to every little thing, could not make decisions etc etc etc. It took me awhile of long term abx to get better. I have classic MS symptoms, but no lesions on my brain (still waiting to get the cervical spine and lumbar spine MRIs done this week) MRI won't usually show much in the way of Lyme unless you have lesions from Lyme induced MS. SPECT scan is better... but as stated above, hard to get.
Posted by jeffinca11 (Member # 25584) on :
Hi Hause,
No, mri is not usually helpful for lyme unless lesions show up on the scan.
It's more useful to rule other things out.
SPECT which shows the blood flow to the brain is the more indicative test.
Know what you mean about feeling a reduced version of yourself. That's how we describe it: kind of like a lower light being emitted if you were a light bulb.
Good luck to everyone struggling with these awful things.
How important is health?
The most important thing.
Posted by elizzza811 (Member # 24713) on :
I had a SPECT scan of my brain, and it did show reduced blood flow to various areas of my brain.
I have OCD, too...the most severe form OCD. And yesterday I learned I've been having seizures.
Posted by annier1071 (Member # 28977) on :
I was diagnosed with lyme 3 weeks ago afer being so dizzy, memory loss, balance issues and off personality too. THey finally agree after seeing my mri which showed signal intensity and white areas in many parts of my brain. Being treated but waiting for the western blot to come back frommy llmd...and approval for PICCand IV...
Posted by thehause (Member # 21237) on :
thanks to all for the replies.
can i ask - is anyone familiar with why Lyme causes decreased blood flow to the brain? I've never seen any solid medical terminology being used regarding the subject... Posted by Pinelady (Member # 18524) on :
thehause there are lots of Alzheimer studies on this. Neuroborreliosis is Alzheimers. I believe it is a direct result of tissue damage caused by the infectious organisms.
Scar tissue/inflammation/iron deposits.
Now add that to heart patients and we are in a real pickle...
Which is one of the reasons we need so much detox to get it out of there...
Posted by thehause (Member # 21237) on :
I would like to throw up a caution flag with the subject of Lyme and Alzheimer's Disease, as this is a subject that can cause a lot of fear (myself included).
There have been some big discoveries recently towards the causes of Alzheimer's and it is now potentially possible to detect earlier in life the dopamine reductions that lead to the disease. Some of it doesn't sound like it would jive to well with Lyme.
I'd wait for more research on this front. Anyone? Posted by Pinelady (Member # 18524) on :
I believe it is the disease that leads to the dopamine reduce..Not the other way around...
Autism is Lyme, MS is Lyme, Alzheimers is Lyme, Kawasaki syndrome is Lyme.....
The only difference in the syndromes is what all else it has come in contact with as well as -how well the immune system can handle it.
Posted by thehause (Member # 21237) on :
it is also possible that a degredation in the DNA / RNA that is not caused by Lyme leads to the reduction of dopamine in the nervous system... i think that this is a jump at the moment until more studying is done, is all i'm saying. nothing we can do but wait regardless.
Posted by sutherngrl (Member # 16270) on :
Since we are talking about Dopamine here.......I developed a mood disorder triggered by LD. This would be a result of too much dopamine. Just thought I would throw that in there. I have to take a mood medication that lowers my dopamine to prevent the mood swings.
Posted by annier1071 (Member # 28977) on :
thehause.
I am neuro lyme and my MRI shows many increased signal intensities and many white lesions. The results stated they are due to MS, Lyme or vasculitis.
My LLMD said the lyme caused the lesions and vasculitis and cognitive issues. My hubby said I have mood issues that I do not really think...but he is on the other side watching me.
The doctors claim that a family member or friend is best to answer questions about a lyme patients mood and behaviour since we do not feel the difference. So an mri will show brain changes when lyme has truly affected it.
Posted by thehause (Member # 21237) on :
Hi Annie, From my understanding, and according to my LLMD, an MRI is too broad to see the changes in blood flow in the brain which present in Lyme patients. You need a SPECT scan.
I didn't quite follow your comment about mood issues. You don't notice them? I certainly do. I notice them all the time and they really bug me because of it.
All the best,
Posted by lpass (Member # 26781) on :
I had a brain MRI done before I knew I had lyme. At the time, the neuro was trying to rule out MS, so he did add'l MRIs on the cervical, thoracic and lumbar spine, all of which came back clear. He told me that it's not MS and he can't give me a diagnosis so the best he could do was prescribe me migraine meds. Huh?! I finally went to an LLMD, was tested positive for lyme and my LLMD said lyme can cause lesions. I also had a spect scan which showed moderate global hypoperfusion (decreased bloodflow) which stated it was a result of vasculitis from lyme .
Posted by Abxnomore (Member # 18936) on :
That's correct. You need a Spect scan to show changes in blood flow to the brain. An MRI will not show that. An MRI will show lesions, however, not everyone who has lyme develops lesions.
I had severe neuro lyme and never showed lesions on my MRI's but showed hypo-profusion on my spect scans.
As far as moods, it took me a while to realize how moody and irritable I had become but I was very much aware of how much my personality had changed.
Posted by thehause (Member # 21237) on :
What if you have Lyme and XMRV (positive for both) and your mind and mood are so messed up that you just want to blow your brains out your ears?
I used to have a good life. Sorry, venting.
Posted by momlyme (Member # 27775) on :
quote:Originally posted by thehause: What if you have Lyme and XMRV (positive for both) and your mind and mood are so messed up that you just want to blow your brains out your ears?
I used to have a good life. Sorry, venting.
Saying a prayer for you.
Posted by thehause (Member # 21237) on :
sutherngrl - before i was finally diagnosed with Lyme i had seen several psychiatrists and neurologists, and through them received a lot of information which led to my taking tons of pills and OTC "supplements". I probably have the medication you're on in a box in my closet. Be careful, I thought this was the case for myself for awhile. It wasn't. It was just the Lyme causing the issues. Typically, they can't really test your cranial fluids (hard unless you're dead or really generous) so it's hard for them to definitely know what is going on w/ your chemistry.
Abxnomore - This change in personality and acquisition of ADD is what kills me the most. I just don't feel like myself. Your name implies you're feeling better. You've gotten rid of the symptoms, yea? You feel like you?
I am set to get a SPECT scan tomorrow. This one will by with a 3 lenses version of the scan which they say is really good. Even though I've seen neurologists and I've had MRIs which have never really showed anything, I had never had a SPECT done. So happy birthday to me.
I'm a little worried that the results may be skewed... i was in an accident a few years ago which left me anoxic (little bit drowned) and in a coma (which was medically induced not trauma related). In the country this happened in, they found nothing abnormal, though i don't believe they did a SPECT analysis. Almost afraid to warn the examining nuerologist... could affect his / her report.
Posted by jeffinca11 (Member # 25584) on :
Good luck tomorrow with the SPECT. Please let us know how it goes and the results when you have them.
I am sure a lot of folks are interested in the process and to see how useful it is in getting better.
Mood issues are the worst.
Posted by Pinelady (Member # 18524) on :
I would like to know if the new imaging for Parkinsons is picking up Lyme too....
My guess is it silver based...
MJF's web site say they have been using in at least 14 different institutions...
Posted by thehause (Member # 21237) on :
Thanks. I'll let you know what the results are once I get them.
The scan itself was interesting... a lot of chilling as they wanted my mind to relax and let the material flow through the bloodstream. The scanner gets RIGHT UP to your face and since you can't move, it gets really claustrophobic feeling.
I almost wonder if a PET scan would be better, but I guess I'll wait to know more. Anyone had a PET done?
Posted by thehause (Member # 21237) on :
I just received the results back from my SPECT scan and they are, simply, very disappointing.
I was shown to have significant negative amounts of perfusion (essentially loss of blood flow) in anterior of the temporal lobes and the hippocampi. Honestly, I had suspected this for years when i was undiagnosed and was taking nootropics which were meant to increase blood flow through the brain. During this time I went through series of very weird and strange headaches as well.
I don't know if it's possible that I'll get any of this functioning back or if I'll ever feel like myself. This could mean the tissue is dead, and since it's part of my brain, literally a part of me and who I am as a personality are gone.
Sad. Sad. Sad. Posted by seibertneurolyme (Member # 6416) on :
the hause,
Did you get a copy of the pictures from your SPECT scan? If so, it would be great if you could post them. Very few lymies have had SPECT's done with the newer 3D scanners. Was the scan done at KU or somewhere else?
If you have not had significant tickborne treatment then I would not give up hope yet. People do improve and their SPECT scans show the improvements as well.
Bea Seibert
Posted by Beagle (Member # 29698) on :
I just had a SPECT scan done last Thursday. I'm glad for this thread so I know what to look for. The results will be mailed to me, but the LLNP who ordered them will not talk to me about any test results until next appointment in March! So, I'm looking for decreased blood flow, right?
Beagle
Posted by thehause (Member # 21237) on :
Bea Seibert, I didn't get a copy of my SPECT images. The doctor who ordered them was outside the hospital where they were done, so the flow of information resulted in me receiving just a letter along with the radiology report. What makes you think I had the scan at KU, specifically?
What do you consider significant tickborne treatment? I've been on abx for almost 2 years and have taken a lot of supplements which I thought would help with the cognitive issues. I was research nootropics long before i was diagnosed because I knew that something was wrong. My primary doctor at the time failed to diagnose - which sucks because I can't sue him, really (sorry doc fans, I would love to as this has ruined my life). I'm sort of gettting apathetic about everything.
Beagle - You're probably looking for the word hypoperfusion or decreased perfusion. You can look them up easy enough but if you see them, you're on track.
Posted by Beagle (Member # 29698) on :
thehause,
After 2 years how much (if any) improvement?
and thks for the medical language to look for on Spect results.
Beagle
Posted by thehause (Member # 21237) on :
Its really hard to tell -- sometimes I feel "better than usual" but never normal. Other times, I feel like I'm destroyed and totally dysfunctional. I don't really know if I've herxed... I used to get sick so much that any time I've gotten sick b.c of a herx, I may have written it up to a standard cold / flu.
Stress and other neuro issues are the wors for me.
Posted by Cathyhobbes (Member # 30546) on :
thehouse, please don't give up. Think of paralyzed people who are told they'll never walk again. I was just diagnosed and joined today. There must be ways of increasing blood flow to the brain. please keep trying
Posted by kadee (Member # 21199) on :
Thehause, have you considered bartonella?
Only after having being infected with Bartonella (after 20 years with lyme), I had the symptoms that you described.
Posted by Beagle (Member # 29698) on :
Kadee,
A LLNP diagnosed me with Bart just from a chest rash that I've had for many years, always thought it was from too much sun and wondering is she could be wrong. Did you have any constant skin rash - not the typlical stretch mark lines, different. She took one look and said that is definately BART, but I've only heard of the stretch mark lines type rash?
Beagle
Posted by kadee (Member # 21199) on :
Beagle,
I have only the typical lines, small brown spots and red papules - no bigger red ones.
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