posted
Hubby had one SPECT scan long ago -- over 4 years ago -- after he was symptomatic but over a year before actual Lyme diagnosis. At that time the environmental doctor was looking for carbon monoxide poisoning as a possible cause of his nausea/vomiting/dry heaves and Parkinsonian tremor!
Of course the report says normal! Have a black and white copy of film only -- never saw color copy and even original film has been destroyed by now.
Does anyone think there would be any point in repeating a SPECT scan at this point? Neuro symptoms are in many ways as bad if not more severe than they have ever been. Cognitive function is pretty good usually, but seizure-like episodes and tremors, myoclonus, asterixas and geggenhalten continues to be a major problem. Recently (last couple of months) episodes of transient Bell's palsy and transient paralysis (claw hand) on an almost daily basis.
I know that many of you have had SPECT's done at Columbia. Is there any place else that anyone would recommend for a SPECT scan? This test costs a lot of money and I'm just not sure it will add anything to the picture.
But then again if it could really convince hubby that he has Lyme and other tick-borne coinfections it might be worth it. When he gets to feeling bad (multiple times daily) he starts repeating all the things the psychiatrists and neurologists drilled into his head before his diagnosis -- it's just anxiety/ depression, you have trained your brain to respond this way and on and on and on ..... He sounds like a broken record and so do I when I tell him that those doctors didn't know what they were talking about. I am so tired of these "discussions".
I hate to think what statements he would be making if I had let the doctors give him electroshock therapy as was suggested multiple times by multiple doctors.
Any advice?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea, I just emailed you but forgot to say that my dghter who has lyme and babs (from me) was on doxy, took a break from it (about 3 wks) and just mentioned her right wrist and hand started "curling up" on her. I'm convinced this is a babs thing. I have the same kind of thing going on with my entire right side. kt
Posts: 740 | From BC Canada | Registered: Mar 2003
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Not much help Bea but I HAVE read SPECT scans are very sensitive and that it makes a huge difference what place does em and who reads em. Wish I had bookmarked that. I would read everything I could find on SPECT for Lyme till I found it if I were you. (If convincing him is the main purpose.) Sounds like everyone is pretty convinced except hubby!
He's one lucky hubby to have you in his corner!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Oh yeah, hence my aprapos moniker.
2 - Spects and my LLMD is puzzled. I have metals toxicity which is also a Fog culprit.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Thanks for the support guys. Hubby is only half-way convinced -- he has been sick so long -- 4 1/2 years and nothing we try really seems to have a lasting benefit. Just talked to MDL recently and found out 2 of his 3 positive Lyme tests may have been false positives (Recombinant Antigen tests) -- very discouraging when tests are so difficult to trust.
Hubby has always been afraid that he has some as yet unidentified progressive neurological disease. I keep telling him that until someone diagnoses something else the Lyme and tick-borne illnesses are the only thing that explains all of his symptoms. Nothing else even comes close.
He was treated for mercury toxicity prior to the tickborne illness and for him that was a piece of cake compared to the current situation. Mercury toxicity is controversial as well, but he had obvious improvement of symptoms which correlated with test results.
I think I just needed to vent, but a SPECT scan might be useful for social security disability hearing as well if that ever gets scheduled (been waiting 15 months now and lawyer says could take up to 2 years).
Thanks again,
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Bea, One of the doctors out here at Cal Pacific in San Francisco also does a good job with Spects for Lyme. Dr. S has it done for his patients and is very satisfied. But I don't think it always shows up.
Plus, I don't think it is any easier for you to get here. So, it would be a gamble. But if you do decide to go for one, it is worth having it done in the right place. They need the right equipment, the right software, and someone who knows how to read it.
If that wasn't done the first time, it's possible his first Spect is invalid. Hard to say, for something that costs that much, but possibly true.
johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Bea, I would suggest repeating it at a reputable facility, since things can change a lot over 4 years. My neurologist never did a spect on me yet (before lyme dx), but when I had some brain lesions on an MRI, he DID repeat that a year later as a comparison study. Mention it to the doc. As a compare / contrast to the last study, it could provide more info.
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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posted
SPECT scan is only one way to look at the brain and only looks at one aspect of brain function, blood flow. One can have an organic brain disorder that is not evident on one test (e.g., SPECT) yet will be evident on another test (e.g., MRI, eeg, CT, PET).
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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