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SPECT scan, anyone?

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Posted 8/30/2018 2:32 AM (GMT 0)
Has anyone here had a SPECT? It's been by far my most useful test, especially since most of my issues are psychological. Anyone else find any value in this?
Posted 8/30/2018 3:50 AM (GMT 0)
I've not had a SPECT scan ... but Dr J talked about it in one of his interviews - he uses it.
Posted 8/30/2018 5:27 AM (GMT 0)
Interesting. If i don't get anything new from Dr M next visit im seriously considering going to Dr J.
Posted 8/30/2018 6:46 AM (GMT 0)

Aerose91 said...
Interesting. If i don't get anything new from Dr M next visit im seriously considering going to Dr J.


Clarification: He doesn't have all patients do the SPECT scan - I didn't and I know many who haven't had it.
But if you wanted it done, I'm sure he'd look at it.

In the interview he says the SPECT scan is 'insensitive' - but that was good because it separates the really bad from the ones who aren't as bad. He said it showed blood flow and asymmetry between the two sides.
I think it helped with decision on whether or not to do IV abx.

/www.youtube.com/watch?v=WDe0L-5yKvI

You can email me if you have any questions about my experience since going to the J clinic.
Posted 8/30/2018 10:55 AM (GMT 0)
Of all the testing I had done early in my treatment, the SPECT scan was the only one that had a definitive lyme diagnosis. The test result remarks section actually stated ...." consistent with Lyme Disease". I started IV six months later when I had the opportunity to change insurance coverage to a more favorable plan.

The MRI done around the same time showed nothing unusual.
Posted 8/30/2018 3:39 PM (GMT 0)

Girlie said...

Aerose91 said...
Interesting. If i don't get anything new from Dr M next visit im seriously considering going to Dr J.


Clarification: He doesn't have all patients do the SPECT scan - I didn't and I know many who haven't had it.
But if you wanted it done, I'm sure he'd look at it.

In the interview he says the SPECT scan is 'insensitive' - but that was good because it separates the really bad from the ones who aren't as bad. He said it showed blood flow and asymmetry between the two sides.
I think it helped with decision on whether or not to do IV abx.

/www.youtube.com/watch?v=WDe0L-5yKvI

You can email me if you have any questions about my experience since going to the J clinic.

I had a SPECT and it was (is) really bad. I've looked but haven't found another person who has as much hypoperfusion as me.

@tickbite666. All my MRI's have been normal as well. Has lyme treatment shown positive results for you?
Posted 8/30/2018 3:58 PM (GMT 0)

Aerose91 said...

Girlie said...

Aerose91 said...
Interesting. If i don't get anything new from Dr M next visit im seriously considering going to Dr J.


Clarification: He doesn't have all patients do the SPECT scan - I didn't and I know many who haven't had it.
But if you wanted it done, I'm sure he'd look at it.

In the interview he says the SPECT scan is 'insensitive' - but that was good because it separates the really bad from the ones who aren't as bad. He said it showed blood flow and asymmetry between the two sides.
I think it helped with decision on whether or not to do IV abx.

/www.youtube.com/watch?v=WDe0L-5yKvI

You can email me if you have any questions about my experience since going to the J clinic.

I had a SPECT and it was (is) really bad. I've looked but haven't found another person who has as much hypoperfusion as me.

@tickbite666. All my MRI's have been normal as well. Has lyme treatment shown positive results for you?

Sorry - I see you have had one.

Are you interested in having another one to compare?

In case Tickbite doesn’t post again here - if I’m remembering correctly - he’s had good response with treatment but relapses when he’s off abx.
Posted 8/30/2018 4:20 PM (GMT 0)
You are correct Girlie...

I've made very good progress and have obtained (at times) 90% recovery, and function pretty well at that level with only minor nuisance neuro issues. But I soon relapse when tapering off ABX, even when I'm on a ton of Buhner tinctures for maintenance. I had IV for 16 months and treated Babs pretty heavy that got me too about 60/65% healed, then some heavy duty Bart treatment with Levaquin and then Cipro combos got me to the 90% mark my first time.

If I had $4k or so to burn I'ld consider another SPECT to compare with my 2011 results. But that's not gonna happen in this lifetime. I stopped paying for most test, except for standard CMP and CBC to make sure I'm still functional. And spend all my money on meds and supps.

Post Edited (tickbite666) : 8/30/2018 10:28:56 AM (GMT-6)

Posted 8/30/2018 4:49 PM (GMT 0)

tickbite666 said...
You are correct Girlie...

I've made very good progress and have obtained (at times) 90% recovery, and function pretty well at that level with only minor nuisance neuro issues. But I soon relapse when tapering off ABX, even when I'm on a ton of Buhner tinctures for maintenance. I had IV for 16 months and treated Babs pretty heavy that got me too about 60/65% healed, then some heavy duty Bart treatment with Levaquin and then Cipro combos got me to the 90% mark my first time.

If I had $4k or so to burn I'ld consider another SPECT to compare with my 2011 results. But that's not gonna happen in this lifetime. I stopped paying for most test, except for standard CMP and CBC to make sure I'm still functional. And spend all my money on meds and supps.

They cost $4k??

I doubt if I could get my (regular) Dr to order one and I don’t know if they’re even offered privately for us here in Canada. So doubtful I could get one unless I had it done next time I’m in DC.
In comparison what does an MRI cost down there?

Private pay mri here is approx $900
Posted 8/30/2018 4:53 PM (GMT 0)
Likewise. I have no money for more tests and especially not another SPECT. i didn't think i need another one since nothing has changed, i was just wondering if it would be a useful diagnostic tool for someone potentially in the future, considering how significant the results were. I always wondered if specific infections present differently on a scan
Posted 8/30/2018 5:12 PM (GMT 0)
It's been a while since I had both the MRI and SPECT way back in 2011. My $4k statement was just a swag recalling that one of the two tests cost was around $2500 at the time, and the SPECT took much longer to administer than the MRI. I had a $5k deductible back then so both were out of pocket.

The northeast by far has some of the highest medical costs in the country. I just did a google search on "cost of SPECT" and found a site that referenced $3479 for National Average. So I'm sure someone can find one below $2k somewhere in the country. Just not in Providence RI.
Posted 8/30/2018 7:18 PM (GMT 0)
I got mine in 2013 at Amen Clinic in NYC. It was somewhere around $1500 but i only did the resting one. With my exercise intolerance i could in no way risk the damage of a post exertional scan
Posted 8/30/2018 9:11 PM (GMT 0)
This post caught my eye - I had a SPECT scan done years ago, and it showed I had a 20-something percent loss of blood flow to one section of my brain and a 40-something percent loss in another area.

Can I ask what you found, Aerose? I've been looking for someone else that had one that showed significant loss of blood flow as well.

I was using low dose Ginko biloba to help increase the blood flow to my brain, and it was working until I got super sick about 6 weeks ago, and many things changed since then. Still trying to get back to baseline.
Posted 8/30/2018 9:51 PM (GMT 0)

Traveler said...
This post caught my eye - I had a SPECT scan done years ago, and it showed I had a 20-something percent loss of blood flow to one section of my brain and a 40-something percent loss in another area.

Can I ask what you found, Aerose? I've been looking for someone else that had one that showed significant loss of blood flow as well.

I was using low dose Ginko biloba to help increase the blood flow to my brain, and it was working until I got super sick about 6 weeks ago, and many things changed since then. Still trying to get back to baseline.

Traveler-

So nice to hear from you but it sucks to hear you had a relapse. I'll attach my SPECT results in the next post
Posted 8/30/2018 10:05 PM (GMT 0)
"SPECT Study Findings

This is a good quality baseline scan. The most significant finding is decreased activity in the orbitofrontal cortex, temporal lobes, parietal cortex and dorsal prefrontal cortex. There also is decreased activity in the prefrontal pole and occipital lobe. In addition, scalloping is evident. These findings may indicate a history of brain injury.
1: Decreased tracer activity in the left and right inferior orbital prefrontal cortex seen at rest.
2: Decreased left and right temporal lobe tracer activity seen at rest.
3: Decreased parietal lobe tracer activity seen at rest.
4: Decreased left and right lateral prefrontal cortex tracer activity seen at rest, and decreased left and right prefrontal cortex pole tracer activity seen at rest.
5: Mild scalloping seen at rest.
6: Brain trauma. A combination of findings suggests past brain trauma. These findings include:
-Decreased prefrontal pole activity
-Decreased temporal lobe activity
-Decreased parietal lobe activity
-Decreased left and right occipital lobe activity
-Decreased dorsal prefrontal cortex activity.

CONCLUSIONS/DIAGNOSES/RECOMMENDATIONS Conclusions
1: Decreased tracer activity in the left and right inferior orbital prefrontal cortex seen at rest. When decreased activity in the inferior orbital prefrontal cortex is seen during a resting state, it is often associated with depressive disorders, and may be responsive to antidepressant medication.
2: Decreased left and right temporal lobe tracer activity seen at rest. This abnormality may be associated with several different symptoms including mood instability, irritability, memory problems, abnormal perceptions (auditory or visual illusions, periods of deja vu), periods of anxiety or irritability with little provocation, periods of spaciness or confusion, and unexplained headaches or abdominal pain. We have found abnormalities in this part of the brain to be helped with anticonvulsant medication when clinically indicated. Decreased activity in the temporal lobes may also be associated with learning problems, especially reading comprehension difficulties and auditory processing problems. Problems in the right temporal lobe have been associated with social withdrawal, social skill struggles and depression (more inwardly directed difficulties as opposed to left sided problems). If clinically indicated, it may be helped by anticonvulsant medications. A supplement alternative might be GABA to help inhibit erratic firing. If memory problems are the primary issue,then we often prescribe acetylcholineesterase inhibitors, Namenda or a group of supplements to enhance memory, such as gingko biloba and Phosphatidyl serine.
3: Decreased parietal lobe tracer activity seen at rest. This finding has been associated with toxic exposure, brain trauma, infection or Alzheimer's disease. The parietal lobes have also been implicated in attentional issues, direction sense, doing complex tasks and orienting oneself in space. Clinical correlation is essential.
4: Decreased left and right lateral prefrontal cortex tracer activity seen at rest, and decreased left and right prefrontal cortex pole tracer activity seen at rest. This finding is often associated with prefrontal cortex symptoms, such as short attention span, impulsivity, low motivation, disorganization, and distractibility. It may be secondary to a physical trauma or other insult to the brain. This pattern, if clinically indicated, may be responsive to psychostimulant or stimulating antidepressant medication.
5: Mild scalloping seen at rest.

This finding occurs when the brain, on the outside surface, view appears scalloped or dehydrated. It is often associated with toxic exposure (such as to drugs, alcohol or environmental toxins), infection or oxygen deprivation at some point in the past. We have also seen it in widespread trauma.

6: Brain trauma. A combination of findings suggests past brain trauma. These findings include:
-Decreased prefrontal pole activity
-Decreased temporal lobe activity
-Decreased parietal lobe activity
-Decreased left and right occipital lobe activity
-Decreased dorsal prefrontal cortex activity"

I'm assuming the brain injury stat is from the encephalitis but who knows
Posted 8/30/2018 11:22 PM (GMT 0)
Wow, thank you, Aerose! That's a LOT of information to type!

One thing I can say is that I had every single 'condition' that they talked about in your last post. So, that being true, I should have had the same basic areas with those types of issues as well. The good news? You can recover from it. I chose to use only the natural substances (herbs, supplements, foods), but I'm sure as long as the body that's getting the pharma meds can process them, then the body will recover at least some. I hope your issues aren't severe in any of those areas! I was in stage 6 dementia symptoms according to this article and recovered mostly:
/www.dementiacarecentral.com/aboutdementia/facts/stages/ plus the infection exposure, toxin exposure, brain trauma (I had quite a few concussions as a child), all of the hallucinations they speak of and the rest (no need to repeat everything you said, right?). I think a lot of us likely have a lot of those things going on, so it's a matter of severity. And that means that there's hope in recovering, although no one can say that we will recover completely as that would be dependent on how severe the damage is/was.

I'm going to have to dig up my results, as all I remember is what I posted above. I've forgotten a lot of it, I'm sure, as I've not found anyone else that had really concerning results, until you posted. Now, I'm curious all over again!

I don't think I got nearly as much information on my SPECT scan though. I did get a cd with the pictures of my brain on it though! All I could think of was "this is your brain on Lyme" when I got it! (I know, bad humor!!)

I won't be home this weekend, but I will look for it next week and see what I can find and post again.

Thank you for posting about this!
Posted 8/31/2018 10:19 PM (GMT 0)
Thanks, Traveler.

I do believe that it's possible to recover from this considering the bulk of it is functional damage (minus what may be residual from the encephalitis). It's just finding a way to fix it....

Do you know what caused your relapse?
Posted 9/3/2018 5:54 PM (GMT 0)
I won't be able to view my CD for another week or so - my hard drive crashed and I'm waiting for replacement parts. LOL.

Well, I still don't know if it was a relapse or a reinfection that did me in. I had two very, very good years where I had more energy than I ever recall having, could do anything I pleased, for as many hours a day I wished type of thing. Then, my adrenals crashed hard, took my thyroid down - It took me nearly a year to find a doctor that would acknowledge my adrenal and thyroid issues - then within a week, I had a tick attach. Symptoms started within hours. I was horrified and immediately went into denial!! I should have known better, but it took me 2 months to get my head on straight and get back into treatments.

So, if it was a relapse, it was precipitated by diving head long into Addison's symptoms, then having my thyroid try to follow that pattern. Or, I was simply reinfected. Without decent testing to know when we have a new infection and when we have an old infection - I never bothered to retest. I simply didn't see the point - I knew what I needed to do and what I needed to treat anyway.

For brain recovery, I've found that the basic activities like 'brain games' help tremendously. I'd suggest starting out on a site like Lumosity, as it will run a few 'tests' to see where your brain function is, then challenge you from there. Then you can go find other 'brain games' that are similar if you wish.

Personally, I still find things like simple word searches, jigsaw puzzles, and even match 3 games helpful, as they help me recognize patterns - something that completely went away when I was dealing with the worst of my brain issue - among several other things.
Posted 9/3/2018 9:00 PM (GMT 0)

Traveler said...
I won't be able to view my CD for another week or so - my hard drive crashed and I'm waiting for replacement parts. LOL.

Well, I still don't know if it was a relapse or a reinfection that did me in. I had two very, very good years where I had more energy than I ever recall having, could do anything I pleased, for as many hours a day I wished type of thing. Then, my adrenals crashed hard, took my thyroid down - It took me nearly a year to find a doctor that would acknowledge my adrenal and thyroid issues - then within a week, I had a tick attach. Symptoms started within hours. I was horrified and immediately went into denial!! I should have known better, but it took me 2 months to get my head on straight and get back into treatments.

So, if it was a relapse, it was precipitated by diving head long into Addison's symptoms, then having my thyroid try to follow that pattern. Or, I was simply reinfected. Without decent testing to know when we have a new infection and when we have an old infection - I never bothered to retest. I simply didn't see the point - I knew what I needed to do and what I needed to treat anyway.

For brain recovery, I've found that the basic activities like 'brain games' help tremendously. I'd suggest starting out on a site like Lumosity, as it will run a few 'tests' to see where your brain function is, then challenge you from there. Then you can go find other 'brain games' that are similar if you wish.

Personally, I still find things like simple word searches, jigsaw puzzles, and even match 3 games helpful, as they help me recognize patterns - something that completely went away when I was dealing with the worst of my brain issue - among several other things.

Im so sorry to hear you crashed so hard. I completely understand the adrenal issues- that's what led me into disease and my adrenal fatigue was horrific.
What are you treating for now? Do you know what infections you picked up?
Posted 9/19/2018 3:45 PM (GMT 0)
I'm so very sorry it's taken me so long to respond - it's been a wicked two months for me. First I got super ill, and the same night I took ill, my older male dog re-broke his back leg. It took me 3 weeks to be able to leave the house, and although my wonderful hubby was doing a good job of getting the dog to the vet, they were waiting on me to make some decisions.

After trying for 6 weeks to stabilize that back leg, we realized it just wasn't going to work, and we had to put my dog down last Monday(day before yesterday). It's been a hard week so far.

But, I have finally got a desk top computer back, so I can once again get back to doing what I do! That will help me get past my mourning too.

So, for a brief explanation of what I did after getting reinfected (right? since there's no way to tell??):

I assume Lyme and Bart due to my symptoms, which were highly typical of those infections. I tried to use what worked last time for me (Chronic Tonic), but it wasn't working for me again. Thinking I may have picked up different strains of the Lyme bacteria, I thought maybe Buhner's would work. Nope.

I started looking at other co-infections I may have missed that could have been hampering my ability to treat effectively, and came across Mycoplasma symptoms that fit me - so I started Buhner's protocol for Myco. I stayed on that for about 4 months and it did seem to help slightly, but nothing like I was looking for.

So, thinking I have chronic infections that I can't really identify, and can't really find a specific protocol that was working well for me, I thought I'd start treating in a more general manner. Boosting the immune system (carefully, as I do have psoriasis), supporting every aspect of my body that was struggling to help take some of the stress off of my body, and work on increasing my calorie intake (I don't do well with eating).

I was doing pretty well this summer. Summer usually 'gets' me, as the heat usually ends up making my symptoms really come out. Sometimes I can get ahead of it by really ramping up my detoxing, and this year it worked!! I've been really quite active up until mid-July when I got super ill.

I was seemingly holding my own up until then, doing lots of yard/garden work and working on the house (after having a small screened in porch built, we had to finish it and are painting the outside of the entire house! ACK!) - so I'm not sure if I was exposed to something or if it was the typical shut down that I can experience after trying to be active again.

So, gong by symptoms, I can see that I had Lyme, Bartonella and Myco - there 'could' be more infections, but I think I deal with a lot of dysfunction simply because I've been infected for over 4 decades now.
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