posted
i finally got my results after a 2.5 month delay from Brain Matters (which i refused to pay for). i want to know if results are indicative of CNS damage due to Borrelia & Babesia?
i've had low back/pelvis pain since 1991 which i thought was a direct result of bike racing (25 yrs). i haven't raced or ridden in 2 yrs due to a broken foot, shoulder surgery, and Lyme.
my low back/pelvis issues returned on 2-3x in the last 24 months. the most recent was after i started Zithro and Mepron (9/18).. my entire pelvic region was disturbed soon after.
first i was sore and achy at the hips/pelvis/buttocks, then my right leg was REALLY sore/achy at the tibia/fibula, then days later my low back/pelvis was blown out.
it hurt to sit, stand or lay down. i did what i could to stretch my psoas muscle but it didn't help. the pain was deep (internal) at my tailbone/butt-crack (much lower than my psoas). shooting pains down my legs.. especially when i sat - sort of sciatic.
i know this pain so well. it's what drove me to see an Chiro/AK Specialist in 1991. my Dr figured it was caused by aggressive bike riding (sprinting & jumping) resulting in a twisted pelvis.
his theory was since my feet were not aligned at pedals/cranks, and my front foot takes the bulk of the weight.. it creates an unnatural position resulting in unbalanced body.
now i'm beginning to think Lyme or Rheumatoid Arthritis is the cause since i've been out of action for 2 yrs, and i haven't done anything physical to provoke it.
i had a draw for RA on 10/2. could this be a Herx, Arthritis or Lyme?
Brain SPECT imaging was performed at baseline and during a concentration task. Significant findings are as follows:
1. There are SPECT findings of bilateral anterior temporal and bilateral medial temporal areas of abnormal hypoperfusion, best seen on the isocontour/3D surface images and Talairach surface images are consistent with probable traumatic brain injury. It is possible that a portion of these findings may represent focal elements of a more diffuse process.
2. The finding of diffuse decreased patchy cortical activity is consistent with probable diffuse neuronal injury/dysfunction, which might include toxic exposure, hypoxic exposure, or neuroimmunological processes. This finding is best seen on the Talairach surface views.
3. There is moderately/significantly increased symmetrical perfusion of the thalamolimbic area. This finding is best seen on the 3D Talairach inner structures or transverse slice 66 at baseline. *
4. There is increased perfusion of the right basal ganglia, right greater than left. This finding is best seen on the 3D Talairach inner structures or transverse slice 66 at baseline. *
5. There is symmetric decreased activity in the temporal lobes bilaterally.
This finding is best seen on the 3D/isocontour surface images. * *This finding may have neurobehavioral implications.
BTW.. i have an HP C6180 printer and it literally does everything. First, it has a feeder.. second, it scans, copies and faxes AND.. get this, you can copy/paste/edit your scans - AMAZING!
i just had to share that. anyway, please let me know what you think, thanks!
-------------------- "The hell with Drs.. we have each other!" My story began here:
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Hi, I had a BEAM scan and QEEG, rather than a SPECT, but the common finding I notice between our scans is the presence of hypoperfusion in several areas.
Hypoperfusion appears to be extremely commmon in Lyme patients from what I've read.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
klutzo: IgeneX mentioned Dr Fallon (Neuro).. is he the only one who can shed some lght on the subject?
Lymetoo: yes, i am on Zithro as of 9/18, and Mepron as or 9/28. thanks for all the reading!
what type of Dr can determine if SPECT has any relation to Lyme??
i was scheduled to see Dr Beydoun, an A+ Neuromuscular Dr at Keck School of Medicine at USC on 10/4. i faxed my SPECT results (along with Lyme, Virus, CD57, Sleep Study) to see if he could treat me. he referred me to his colleage.
Dr Bandari, also a Neuro/MS Specialist claimed he was unable to treat me, and i have yet to receive a referral from him.
results in a nutshell are: muscle Bx indicated myopathy. sleep study indicated sleep apnea, poor sleep efficiency and underlying psychophysiologic or medical conditions. exercise test indicated myopathy.
CD-57 was a 32, and viruses speak for themselves. there has been absolutely no explanation for anything and not one of the 35 Drs i've seen (minus LLMD) attribute any of it to Lyme.. is that the nature of the beast?
my LLMD ordered another SPECT last week before these results arrived. i'm going to get the second one so i can compare them pre & post treatment.
would there be changes from Zithro & Mepron, or should i wait to get in a month or so of IV Rochepin?
i thinks this could be the best and only way to monitor progress.. what do you think?
-------------------- "The hell with Drs.. we have each other!" My story began here:
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Please consider staying away from all but your LLMD. The neuro folks are notorious but not believing in Lyme and you may end up with a zillion other tests and nothing conclusive.
I was told my neuro who saw my SPECT scan "the radiologist who read this report could have been led down a diagnostic path by the doctor who ordered the test for you". ?!???????!!!!!!!!
Posts: 3528 | From US | Registered: Apr 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Sonic.
Hypoperfusion is indicative of, but not absolutely diagnostic for, lyme disease. In other words, even if you went and repeated your SPECT with Dr. Fallon -- he would tell you the same thing.
However, we DO know that you have lyme, because you have a positive lyme test. You also have a positive babesia test.
Combined with your symptoms, the tests plus the SPECT have led to the need to treat with a good LLMD. You are doing that, and fortunately are duck-free at this point. The more people you see who are not lyme-literate, the more you are going to be confused and begin to doubt that which seems pretty clear at this point.
Good luck treating. And go easy on yourself!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Not familiar with your story, but in my opinion you should wait a minimum of 3 months but more realistically 6 months or even longer before repeating your SPECT scan. Usual treatment for Babs is minimum of 4 months -- and that is if you are lucky. Could take much longer to get rid of the Babs.
Unfortunately SPECT hypoperfusion could be caused by Babs instead of Lyme -- there just have not been enough (if any) studies to document a pattern for a SPECT based on Babesia. Most Lyme patients have coinfections so who is to say which tickborne infection actually is causing the hypoperfusion?
I would also advise skipping the neurologists and any large University Medical Centers -- waste of time and money unless someone from LymeNet or another Lyme support group recommends the doc.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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since i originally tested mid July, i'll wait until late Dec. i'm finished with Neuros, Rheumies, ID's, GI's, etc - promise. i was just following insur/union protocol trying to get legit Dx.
i hold them reponsible for my delayed tretment. i played by their rules and got no where. my GP, and all the ducks the IHN referred me to, failed me terribly.
treatment is my primary concern, which has FINALLY started. i'm doing a lot better in just 3 wks.. but i still have tons of questions that many of you may have answers to.
i have managed moderate cardio workouts 4 days in a row.. 30 minute session (8 miles, HR 136-150bpm), and i feel GREAT! this was NOT possible 3 months ago.
i really appreciate your thoughts and comments.. please continue to share them with me, thanks! -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
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