posted
I have my SPECT scheduled for tomorrow. It will determine whether I go on IV. I'm currently on mino and ceftin oral. My ID doc(covered) ordered the scan since the bloodwork she ran for Lyme and co-infections came back negative(Quest). She does have my positive Igenex test in hand. She believes it's Lyme based on process of elimination and believes it should be treated with IV, but needs some type of diagnostic to prove it with the insurance companies. Will SPECT show this? Otherwise, is IV a necessity or will orals do the trick?
Posts: 70 | From Fairfield, CT 06825 | Registered: Apr 2005
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timaca
Frequent Contributor (1K+ posts)
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Spect scans can show what is happening in the brain with regard to how well (I think) the blood is profusing in the brain.
To get some really good info on spect scans, go to www.columbia-lyme.org. View the slide show, and also the brain imaging section and the ask the doctor section....I think you'll find info about spect scans in all these places.
Spect scans can show if the brain is being perfused normally or not. If not, one can't say it's because of lyme, for encephalitis and drug use can cause the same kind of hypoperfusion.
Good luck...I did have a spect scan done, and it showed "moderate, global, cortical hypoperfusion with heterogeneity. This perfusion pattern is consistent with encephalitis or vasculitis, such as from infections, eg. lyme disease, autoimmune causes or secondary to some medications."
Based on that, and on my cognitive function tests, and my symptoms, my doctor is recommending IV antibiotics. My insurance company is denying that.
Both the columbia website mentioned above, and the CDC's website, state that lyme disease with CNS involvement, should be treated with IV antibiotics. So, I'm appealing my insurance's decision.
Good luck....Tina
[This message has been edited by timaca (edited 07 June 2005).]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I had my spect and columbia and it said moderate global hypoperfusion heteregenous. I was thrilled that I had reasoning for the feelings and thoughts, but now the remedy? I on 6 mos of rocephin and just started levaquin for bartonella. I hope you do well and good luck,
Cigi
The diagnosis is almost the same as Timaca's and the interpretation is the same. Not a diagnosis but is seen with encephilitis...
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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mbroderick
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There are a lot of supplements that can help improve bloodflow (and cognitive function)if the Spect scan shows areas of deficiency. Ask your LLMD.
Posts: 2097 | From PA | Registered: Jan 2004
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timaca
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my spect scan was done at Columbia too. Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Here's the problem. My LLMD is 575 initial vistin and 275 for every follow up. This is a highly regarded LLMD and honestly, I just haven't gotten a whole heck of a lot out of these appointments. He doesn't really believe in IV. I decided it would be MUCH nicer to have this covered and went to a infectious disease doc. She isn't into the whole long term abx thing, but she does believe in IV. She's using the SPECT to look for proof.
Posts: 70 | From Fairfield, CT 06825 | Registered: Apr 2005
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lla2
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I don't necessarily think iv's are the way to go. I was so bad with bart I had seizures adn horrible cognitive function as well as encephalitis...after 2 adn 1/2 years of aggressive oral abx and supplements i'm now 95% bettter.l.no ivs ..all oral abx..
sometimes ivs can make you crash harder once you stop them...just make sure to weigh all your options..its not an easy decision, andit's not the only way to get you better..there are many on here who have gotten better orwho are now gettign better with only orals..
best with your decision.
lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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Honestly Lisa, I don't feel like being on antibiotics for 2.5 years. I've heard from others that orals could be the way to go, but I just don't know if I can sacrifice 2.5 years of my life to fighting a disease. There are many that say that IV is absolutely necessary for neurolyme. Call me crazy, but I'm hoping that I can fight this off to a level of livability sooner rather than later and let my immune system take hold after that. I don't want to become abx dependant here. I just want to knock this out as swiftly as possible and then just fine tune my system.
Posts: 70 | From Fairfield, CT 06825 | Registered: Apr 2005
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mbroderick
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My son had terrible cognitive problems about a year-and-a-half ago. The Spect scan showed lots of problems. He started on oral doxy and biaxin and is now taking zithromax with tremendous improvement. He was barely able to finish highschool and is now enrolled in college full-time. He's never been on IV but will continue taking oral abx - some symptoms are very stubborn.
Posts: 2097 | From PA | Registered: Jan 2004
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Foggy
Frequent Contributor (1K+ posts)
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Mine was normal and I'm in a foggey daze. Go figure? LLMD said this was encouraging. I was too dazed to celebrate.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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My problem is that I'm a large guy. I'm 6'4", 225 lbs. I don't know if I can get enough abx saturation with oral.
That being said, EVERYONE I speak to around her, and there are ooooodles of people who have had it here, have gone on IV to get better. I just came back from my SPECT. The technician said he sees 2-4 people weekly for the SPECT. The woman registering me had it. She said she had it undiagnosed for 3 years. Was fainting. 3 months IV did the trick. The people I was sitting with in the waiting room, their father and friend had it. IV did it. I mean, it's almost to the point where here in CT, it's like who DID NOT have it. It's ridiculous.
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