posted
I'm scheduled for a spec scan in two weeks. I expect less than normal blood flow and wouldn't be suprised by a few lesions. First question - can bartonella be the culrpit causing this presentation? I know I have bart - i can't man up and take a floro just yet and have been not making too much progress with the rif/zith. i have a script for bicillin - but i feel as if this will be palliative - lowering inflammation in my cerebelum only to have it come back when i cease the meds. will treating bart with a floro improve my spec? or are all lousy looking specs a result of neuro lyme
-
-------------------- Bit in March 2005. Posts: 58 | From Jersey | Registered: May 2008
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I never used a quinolone for Bart. My LLMd said Biaxin would get it. Have you tried Biaxin for Bart? Zith was hard for me, too hard, so I was put on Biaxin (long term) which I handled better, it beat Bart in about 9 months. Believe me, you will know when Bart is gone, it is just another layer and you lose a few nasty symptoms once it is conquered.
I did Bicillin and it helped improve many symptoms. LLMd's always say Bicillin is a 6 month to 1 year committment to see results. I did 2 "rounds" first one was 2.5 months and the second one later down the road, only 4.5 months. I am considering going back on it. It was the only abx I really started having good days on. I did that w/Biaxin as well.
I don't know if you can have improvements show up on a spect scan from orals, I have heard people on IV report it though.
I never had a SPECT scan. I think it would freak me out!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I never had one either. But I had plenty of neuro symptoms. And some of them have improved on oral antibiotics.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Has your SPECT been ordered by your LLMD and will a LL doctor INTERPRET the results?
This could make a big difference as, with many brain scans like MRI, if the radiologist or other person interpreting the scan is not familiar with the changes in a brain from lyme or other TBD (tick-borne disease) or even other chronic stealth infections - well, then your report may not actually be true to the scan.
Now, then, if your LLMD has ordered this and instructed you which place to go for testing, you should be in good hands.
I would not be too concerned with what it will or will not show. You actually WANT it to be normal. However, if there is anything there that would show detail so as to better identify your healing path - well, then, that is where it could help.
You might share the info below with your LLMD and see if you might be able to exercise before the test a day or two - but your LLMD may say it would not be safe, depending upon the state of infection you are dealing with. Even short aerobic exercise could be dangerous to your heart.
So, while I can't answer your questions (your LLMD should be able to, though) . . . you can see that the results for a SPECT are just for that moment in time. If conditions change, your brain may react differently.
========================
In the book, The Clinical and Scientific Basis of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome
authors: Byron M. Hyde, M.D., Jay Goldstein, M.D. and Paul Levine, M.D.
The Nightingale Research Foundation reprinted p. vii which shows three sets of SPECT scans. (1993, I think.)
Taken in resting, post-exercise and 24 hours post-exercise, the images show an immediate post-exercise effect with perfusion and
``illustrate the severely decreased brain perfusion of the same patient 24 hours after the brain has been stressed by physical exercise."
This is a most remarkable piece of paper. You can see the marked impact upon the brain in the nine photos from the SPECT.
I can't find a copy of the page on the web, but you could request a copy from the Nightingale Research Foundation at
Dr. Goldstein, Addendum I, shows common stress pathways, and might also be available upon request.
=============================
(Decreased brain perfusion is also called hypoperfusion - meaning low blood flow.)
Beyond that, (if you are working with a LLMD), your LLMD would be familiar with the work of Brian Fallon at Columbia as Dr. Fallon has written of his work with SPECTs of lyme patients.
If you are not working with a LLMD, I would hope your doctor would study the work of Fallon and that from the link above - with any recent findings since the date that was published.
==============================
This is why, though, exercise even for the test might not be a good idea:
WHEN WORKING OUT DOESN'T WORK OUT By Dr. Christopher R. Snell, Dr. J.Mark VanNess and Staci R. Stevens, Guest Contributors
The CFIDS CHRONICLE - SUMMER 2004
EXCERPT:
when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E.
Post-Polio and Post-M.E. New book furthers polio hypothesis
Jane Colby
The CFIDS Chronicle - Fall 1996
excerpt:
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3] (See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 Chronicle, page 37.)
What are we doing to our teenagers with M.E. when we force them back to school, deny them home tuition and tell them to exercise as a form of therapy?
We know that muscle cells in M.E. have faulty "battery" mechanisms and that energy cannot be readily regenerated.
======================
Also to consider: mitochrondial dysfunction that is common for lyme patients. That will not likely show on any kind of brain scan.
======================
While SPECTs can be helpful, they can't tell us everything so be careful not to put too many expectations on it.
I had a SPECT done when VERY, VERY ill. I was falling, with and without drop seizures, could barely walk or talk and would literally fall asleep when walking. My SPECT was ordered by a neurologist determined to show me nothing was wrong.
He said the SPECT was fine. I asked to see it, just curious as to what the inside of my brain looked liked but I was not allowed to see the results. When I later formally requested it, I was told it had been lost. I tried a time or two later and even the record of it having been done was not there.
Now, my SPECT was probably fine - but I was still extremely ill. In fact, even aside from all the falling, I am really surprised that I actually lived through that time of my life, that's how sick I was.
I sure would have liked to have seen the SPECT myself, though. I doubt the doctor tossed if had there been anything wrong but it may have showed some things that regular reviewers may not have understood and been declared "artifact" - that is a sort of "noise" on any scan that cannot be explained. Often, these things do just happen but, far too often, some clues are dismissed as being simply "artifact."
I also had EEGs done of my brain - and so many "artifacts" were dismissed that they thought I somehow was "cheating" on my EEG. They said they'd never seen so many. Report said: normal. I had had several seizures during the EEGs and I had two seizures on the way home that day. But the (non-LL) neurologist said my brain was fine, as per the EEG.
Later, but still even before 3 TBD had finally been dx, an MRI did show some lesions. But, that, too, was said to be normal for someone my age (about 43 at the time). It also said I had had two minor strokes. Also said to have been normal for my age and my doctor said I was fine - just get on with my life.
I was still another year, then, before an inner ear doctor suggested lyme tests, which were first done incorrectly, so my PCP said I was fine. Later, other tests showed 3 active but long term tick-borne infections. So, clearly, the SPECT, the EEGs, the MRI - were of no use. My symptoms were just ignored but they were a huge piece of information to anyone who was a LL expert.
So, back to the most important piece of this: be sure your SPECT is ordered and reviewed by a LL expert. AND - the test may tell you things - or it may not. It will not be a yes/no as to if you have neuroborreliosis.
A SPECT scan is still just of that moment in time. With lyme, overexertion - or other factors - could very likely have a brain looking very different one day from the next regarding blood flow.
While tests and labs can help, sometimes, SYMPTOMS are the most important distinguishing factors in such a diagnosis.
I hope your results either look excellent or pinpoint exact details to help your LLMD better design your protocol.
Good luck. -
[ 02-04-2010, 03:15 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic