posted
Done get me wrong I dont want to be sick...
my LLMD arranged a spect scan for tomorrow, I know we want to be well and have everything be negative but in this Lyme boat it seems we want this to be positive to affirm what we are feeling......
the same for my spect scan tomorrow....I'm worried that it will be negative or fine and so why these symptoms??
Is that weird to think that way, you actually want something to show up?? ....
why am i hoping to have something wrong on a test??....................I think again its so you can say see I told you so...........
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
I had the same feeling half year ago when I had a spect scan. I have very bad brain fog, memory and cognitive problems, axiety..... and the spect scan came back negative...
-------------------- having LD since 2005 Posts: 45 | From Los Angeles | Registered: Sep 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I felt the same way and was actually glad they found lesions in my brain for the mri. Remember, these tests mean nothing. Had 2 spect scans and showed hypoperfusion mwaning could or could not be lyme. If it comes out negative, it means nothing. symptoms are everything with this. I know how you feel. If it does, great, if it doesn't, means nothing. I have negative tests and positive brain results. sick stuff. Good luck and feel better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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julielynne4
Unregistered
posted
I think I posted something similar a few months back before my spect scan. It was disappointing because it was negative. These tests mean nothing if they are negative. There is no question that my 25+ years of lyme and coinfections has affected my brain.
Don't stress about it, if it is negative don't give it a second thought. Someone told me once that in NY (where I live) I would have to go to Columbia Presbyterian in NYC and have it done there in order for it to be reliable. (I think it might be Dr. Fallon there).
posted
if its negative...what do the drs say regards reason for brain stuff..............
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your LLMD will handle this just fine. Deal only with your LLMD about this.
Relax. Just be honest. Take your brain there and just let the machine see what it can. It can't see everything, by the way - not by a long shot.
So, yes, if it shows something, that can help guide treatment.
But, as long as you work solely with your LLMD on this, you will not be forced to then "prove" your illness otherwise if the SPECT is clear. That, too, would help to guide your treatment.
What you want is the truth, to have some light on this obscure roadmap in your brain. Just be yourself. A good LLMD will not drop you. Really. Present yourself as you are and live in truth and all will work out. Good LLMDs use many tools for discovery. The SPECT is just one of those. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I don't know...I feel pretty good cognitively compared to a lot of others I know. Plus the morningo of my SPECT scan I took 30 mg of Adderall, which studies show is proven to markedly improve your SPECT scan. They use SPECT scans in studies to prove how well Adderall works. Naturally I did not know this when I was going for my SPECT scans. I needed the Adderall to be able to get out of bed and make it to the scan!
When I got there they wanted to cancel it because I'd taken the Adderall. I begged them to do it anyway because my fatigue was so profound I did not think I'd ever manage to get there again! Despite the Adderall and feeling cognitively okay, my SPECT scan turned out pretty darned awful!!!
I, too, thought it would be normal. In fact, if it was THAT BAD with the Adderall, imagine how screwed up my brain REALLY is!
That was over a year ago, and I'm supposed to go for another one now, but since I have had more radiation at this point than victims of Chernobyl by far, I'm passing on it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
is there any other meds that should or should not be take before a spect......that will alter the result???........................
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you exercise today (don't knock yourself out but see if you can push the envelope a little), that may be helpful as the SPECT can show hypoperfusion (decreased blood flow) after exercise for CFS patients. Many lyme patients have hypofusion - that's one of the main things the SPECT looks for.
I'll look up my notes on that and come back. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.)
(p. vii) 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, as soon afterward, get some fresh organic carrot juice in you. Some beet juice and a little ginger root, too. Some greens also.
Drink lots of water for a few days and keep the fresh organic juices going. If you can't juice, just be sure to eat lots of vegetables for the beta carotene.
Some freeze dried garlic capsules (WITH food) might also help to clear your tissue of the stuff in the IV mix.
I'm very sensitive to even a whiff of any chemical but I did fine with the IV injection.
It's just good to load up on beta carotene foods as much as you can afterwards. Maybe some gentle exercises and a warm (never hot) bath in epson salts. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
I cried with relief when my blood work came back positive for Lyme-such an affirmation that I was not a hypocondriac.
The doc who then ordered the Spect Scan mentioned that even if they are negative they can treat for neurroboriolisis(sp).
Fortunately my Spect Scan showed all the defects necessary for coverage by insurance for IV Rocephin and also confirmed that I wasn't just crazy-there was a reason for my problems.
So yes- I think a lot of us can relate to the relief of a positive test.
Good luck. Hope things work out for you.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
I know exactly what you mean but please don't hope that something does show up.
I felt that too, finally I had something that could be seen, initially I was shocked but was also so relieved and the doctors did take me a lot more seriously. Now I feel a constant sense of dread, am I going to be able to walk or talk or even make sense tomorrow.
I had a second brain mri done last week and am scheduled for ct of the spine this weekend. I don't have a doctor appointment scheduled until the end of August so I am going to pick up the mri disk and load it on my computer to compare to the last one from last year, which I still have. I have to admit I feel sick to my stomach.
I certainly understand that if you need something to show in order to get treated like JR then I hopw something shows up.
It is so frustrating that nothing shows up on a test that is acceptable to people other than our small lyme commnutity but if you do not have damage that shows on a scan the better your chances are of having a full recovery.
Wishing you all the very best for your test.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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