posted
Hi, awhile back I had a SPECT scan done at Columbia and the results were, well, unexplainable:
"There is normal cerebral cortical perfusion. However, deep white matter perfusion abnormalities raise the question of underlying white matter disease in the absence of enlarged ventricles."
My LLMD had never seen anything like it. Does anyone else have results this vague? Can anyone shed light on these results? BTW, I also had an MRI and CAT scan done and those were normal.
I've gotten absolutely nowhere since I began treatment last April which is pretty distressing...
Posts: 57 | From Florida | Registered: Jan 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Wish I could help. Mine said twice when I took it mild-moderate heterogeneous global hypoperfusion, as can be seen in encephilitis, vasculitis, medications and lyme disease. (means slowness of circulation in the brain in English). Its a common diagnosis for lyme, but I was told it could be from the other things too, which led me to nowhere. Did you go to a neurologist (preferably lyme literate). Good luck - Give treatment time - its hard to have patience when you feel so bad. Are you doing IV or orals
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Wish I could help. Mine said twice when I took it mild-moderate heterogeneous global hypoperfusion, as can be seen in encephilitis, vasculitis, medications and lyme disease. (means slowness of circulation in the brain in English). Its a common diagnosis for lyme, but I was told it could be from the other things too, which led me to nowhere. Did you go to a neurologist (preferably lyme literate). Good luck - Give treatment time - its hard to have patience when you feel so bad. Are you doing IV or orals
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Wish I could help. Mine said twice when I took it mild-moderate heterogeneous global hypoperfusion, as can be seen in encephilitis, vasculitis, medications and lyme disease. (means slowness of circulation in the brain in English). Its a common diagnosis for lyme, but I was told it could be from the other things too, which led me to nowhere. Did you go to a neurologist (preferably lyme literate). Good luck - Give treatment time - its hard to have patience when you feel so bad. Are you doing IV or orals
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
One of the many docs I saw before I found an LLMD was a neurologist. He thought my twitching was due to BFS (Benign Fasciculation Syndrome) but couldn't explain these horrendous chronic head symptoms (wooziness, headaches, burning sensations, pressure).
I did orals for a few months (Doxy, Flagyl/Tindamax) then IV Ceftriaxone for 12 weeks which did nothing, and now back on orals, taking antibiotics specifically used to treat biofilms (first minocycline, then biaxin, then lastly plaquenil).
I tested positive for only one co-infection, ehtrlichiosis. My LLMD won't treat Bart and Babs since I didn't tested positive for those. I wonder whether that's the key to all this. Maybe I should go to a new LLMD to prescribe medication for these other co-infections just to see if it does anything. Any thoughts about that? Thanks...
Posts: 57 | From Florida | Registered: Jan 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
You are describing all the symptoms of Small Fiber Neuropathy. I am surprised a neurologist didn't pick up on this. You need a punch skin biopsy to diagnose 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
Hmm, it doesn't sound like Small Fiber Neuropathy. I don't have burning or pain in my feet at all. I should, however, go back to a Neurologist. And dare I say it, I'm wondering whether to seek out an Infectious Disease doc. to look into viruses. Any other thoughts? Thanks
Posts: 57 | From Florida | Registered: Jan 2009
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posted
I would give bart and babs treatments a trial. Hubby has had several LLMD's tell him that his tremors and myoclonus could be caused by either Lyme or bart or babs.
We have pretty much come to the conclusion that for him it is the mystery pathogen -- mycoplasma or bart or BLO or whatever has been found on his bloodslides from the F lab and Clongen.
A year ago his tremors almost totally went away for a month or so with Cryptolepis tincture. Unfortunately the supply of this African herb ran out for several months and we have not been able to duplicate the results again.
Whatever this pathogen is it seems to develop resistance to many meds quickly.
We are experimenting with Stephania tincture now. Seems to be helping mood wise after only 3 days, but too early to tell otherwise.
I would suggest getting a bloodslide from either the F lab or Clongen.
Also, if it has been a year or so, I would suggest repeating the MRI and SPECT. Changes to MRI's sometimes take months to show up while a SPECT is more functional and shows more immediate changes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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