posted
Over the past 2 years my daughter has had a number of MRI's, MRA's, CT Scans and a SPECT scan of her head to try and determine why she has so much head pressure and head pain.
All the test came back normal.
She has been treated for Lyme, Babesia and Bartonella but still has the head pressure.
The only thing that takes the edge off are really strong prescription pain killers.
We have copies of these tests. Some are on film and some are on DVD to be viewed on a computer.
Even though the tests were originally read at the time they were taken, is it possible to find a specialist to read these again to see if anything was missed?
Is there anyone who has had this done?
The doctors only get the reports of what was seen by the person reading the tests from what I've seen.
Where can I find someone to do this?
Thanks very much. Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I imagine that it can be done Paul. My symptoms are the exact same as your daughters. My SPECT, several MRI's came back normal. I had a MRA that was read by the radioligist as "suggestive of vasculitis"
However, two neurologists were not excited about the MRA and called it "abnormal Normal" whatever that means.
Nothing touches my pain. Does your daughter have this everyday? I do.
She may have the "mystery bug" Has she had a F blood smear? Suggestive of hemobartonella/mycoplasma?
You might contact hospital radiology departments and request a reading.
Good luck, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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I'm sorry your suffering with these symptoms. They're horrible.
She's had continuous head pressure for 2 years. She describes it as an elephant stepping on the left side of her head.
It's mostly on the left side but goes over to the right side when it gets really bad.
She has papilledema (swelling of the optic disc) but her lumbar puncture showed normal pressure. She taking acetazolamide which should reduce the pressure but the head pressure is still there.
She's been treated with IV Rocephin, IV Rifampin, IV Levaquin, and other oral antibiotics. Also treated with Mepron and Artemesia.
She's been on Fluconazole for yeast and she just switched to Sporanox yesterday.
She has not had the F blood smear yet.
I've been away from Lymenet for a while. What is this mystery bug about and have people been getting diagnosed with it?
Would any of her prior treatments have killed it off if it was the mystery bug?
Thanks, Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Maybe the mepron and artemesia wouldhave done something. But it looks to be that other meds are needed, specific meds.
Possibly bactrim with the mepron and artemisia. Primiquine. Read the mystery bug thread if you have the time. They are calling it little babesia. It has a DNA similair to toxoplasmosis and malaria. Also calling it the malaria of North America.
I think that it may be the *something* that is missing.
Good luck and let your daughter know that I feel her pain.
Posts: 3975 | From usa | Registered: Aug 2007
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