posted
I got my C.U. SPECT scan results back: "diffuse, global cortical hypoperfusion. This perfusion pattern is consistent with severe encephalitis or vasculitis, such as from infections e.g. lyme disease, autoimmune causes or secondary to some medications. But favors pattern seen in depression."
It also says the hypoperfusion is moderate to severe and without heterogenaeity. Apparently a scan that supports LD has heterogeneous hypoperfusion.
I was told that it does not support a diagnosis of L.D. When I had the scan, I was deemed "in remission" by a really good LLMD and was feeling great.
Just after I had the scan done, I started back up in taekwondo (and didn't pace myself well) and within 2 weeks was experiencing swelling and right-sided joint pain, with extreme fatigue. I feel like my brain doesn't process things correctly.
My LLMD said what I was experiencing was consistent with a lyme relapse and it appears that I have no co-infections (no symptoms of them, plus no positive tests). I am back on medication as of 2 weeks and not yet feeling better.
One thing I get when I am sick is a debilitating 2 week PMS, which I am going through right now. It knocks me down to about 25% of normal function. I am feeling really bad.
I am very upset that I am feeling so badly and now this SPECT scan supports a diagnosis of depression, not LD. When I was diagnosed almost 2 years ago, I had a CDC positive IGG and IGM WB at Igenex, but I do not test positive at any other lab.
I was so sick and depressed at that time, with suicidal ideations, and had to be hospitalized 3 times. Several weeks of IV rocephin returned me to myself and made me so much better. I have not been that sick since treatment.
Now I am left wondering if it was ever LD?
Posts: 48 | From USA | Registered: Aug 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi NoVAChick.
Well, I wouldn't spend a lot of time worrying about WHY you have severe hypoperfusion. The fact remains, you have it.
A lot of times this hypoperfusion can improve with treatment. You had just a few weeks of Rocephin. Any chance of more?
It's pretty indisputable you have lyme disease, with a CDC positive IgM and IgG, not to mention big improvement from treatment. The lyme-specific bands on your western blot really cannot lie and can't get there any other way.
I don't know the length of time since you stopped treatment and are now having this relapse. How long? How long was your total time in treatment?
It could be coinfections or it could be a relapse. That's only for your LLMD to decide. However, I would definitely NOT doubt your lyme diagnosis. Stay in treatment and expect great things!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Michelle, Thank you for your kind response. I think I was on Rocephin for 4 weeks worth (although it was pulsed and not taken every day, so it spanned longer than 4 weeks), then when insurance stopped paying, I tried to go off and couldn't, so went back on for another couple of months.
The rocephin treatment ended a little over a year ago, then I was on various orals for several months until the LLMD 2 docs ago made me sicker with abx, so I stayed off.
I have been off abx since summertime with the exception of occasional Pen VK which helps my OCD (interestingly, my brain SPECT didn't show OCD).
I just got back from my PC physician who put me on an SSRI for PMDD. Interestingly, I had this before diagnosis and treatment and it went away with treatment. I have only had PMDD symptoms this cycle and last cycle.
At any rate, I am happy to do whatever works for relief, as I cannot function being debilitated for 14 days each month.
Thanks for the encouragement and reassurance. I just get frustrated because nothing ever seems clear cut to show I have LD. I think I even question the blood test because I was negative everywhere else.
Anyway, thanks again.
Posts: 48 | From USA | Registered: Aug 2006
| 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