Just received this diagnosis yesterday from the results of a brain CT Scan. The scan was given to me at the hospital after a head injury.
They said my CT was fine at the hospital but they were looking for bleeding from the accident. Yesterday when I saw my PCP, she told me that my brain is injured, she thinks from my infections.
Stands to reason, i guess, as my worst symptoms are brain related. Pressure/sensations/ head pain.
Just want to know if anyone else had these results and if you were able to stop the progression.
Posted by feelfit (Member # 12770) on :
ps- also had what was called a TIA awhile ago. They could not tell if it had been old or new back when they did the scan.
Posted by tickssuck (Member # 15388) on :
Hi ff,
Who gave you this dx? It sounds like the hospital said scan was "fine." So, was it your PCP who put this name/label on it? If he/she thought "it" was from the infections, did he/she have ideas for how to treat this?
I, like you, haven't had much luck with abx - I stopped in October 2011. What, if any, treatment are you doing right now? Sorry to hear this; but, I pray that since you've been "in the trenches" with all this for awhile, you're not going into alarm/freak out mode. However, you likely want a plan and input on how to best address things...
Thinking of you....TS
Posted by tickssuck (Member # 15388) on :
Also, would you consider abx again or not? For me, I would question, why would it actually help this time when it didn't really help last time? However, maybe a different drug?
I don't know, just thinking out loud here. I know we share some similar symptoms and not much response to abx, unfortunately.
I wish there was some way to get some sort of a line directly into my head to douse my brain (and yours:)...any such thing???
xoxo TS
Posted by Keebler (Member # 12673) on :
- I can't think well enough to answer. Sorry. But i do think it's entirely possible to get better.
Do you have a LLMD? The LLMD needs to interpret that scan personally.
A possible role for inflammation in mediating apoptosis of oligodendrocytes as induced by the Lyme disease spirochete Borrelia burgdorferi -
Posted by feelfit (Member # 12770) on :
Hi TS- No, my PCP did not diagnose me. The CT report stated: Early onset cerebral atrophy. I Googled : Cerebral Atrophy Lyme and there are many accounts.
Cerebral atrophy happens in a small degree in everyone as we become aged. But mine is early onset, indicating that I am too young to generally see this.
At lest I know the reason for my cognitive difficulties. And infection and neuro-syphylis are listed as causes....so.....I guess my doctor ws going on that.
My LLMD does not have report yet, but he has been pushing IV Rocephin for my last 2 appts. and I know he will be even more unrelenting now..he claims that my brain needs this to heal.
I have had minor improvements on IV invanz, but have never reached baseline, before taking my first abx- they made me worse and I have collateral damage.
I have been on various IV therapy 4 times now. So when does one say, 'no more'? I stopped all abx for the most part last Summer. Only doing anti-fungals and repairing my gut. Plus working on immune system.
I received my genetic results and I hope that addressing this will lead to better detoxifying and healing. I did the Amy Yasko 30 mutation panel. You may want to look into it.
Keebs, ty for your response and for the very interesting link.
Posted by tickssuck (Member # 15388) on :
Hi ff,
Yes, I googled the same thing. Right, many hits. At least you know the cause, now to rectify it, sigh.
Yeah, I'm sure this will really fuel your LLMD to rec more IV. However, maybe this time, you're in a better place for it? Maybe with some of the immune system work, you'll have a better response. Maybe worth a try?
Yes, I'm not doing much of anything. Just bumbling around with my usual neuro symptoms. My vision has really been going South which is both bothersome and concerning, sigh. I am trying to decide if I want to go super-alternative or back to another LLMD who likely will want me to flush more abx - part of me thinks, "been there/done that," and the other hopeful part thinks, "maybe I'll have a better response." How to know?
Keep us posted. Sending good thoughts your way. xoxo TS
Posted by tickssuck (Member # 15388) on :
Oh and thanks ff, yes, the Yasko mutation panel, might be worth me looking into. Guess my first order of business might be to find a doc to help me wade through everything and direct me!
Unfortunately, I just have yet to feel really connected with any LLMD. They've been far too busy and I just don't feel like I've gotten good, SPECIFIC TO MY CASE, care. I get to a place of just giving up, not pursuing any doc for help. So, back to square one I guess. TS
Posted by Ellen101 (Member # 35432) on :
My MRI did not have that diagnosis, but when I received a copy it did say "generalized cerebral volume loss" Not sure what this means! Of course I did some google searches and was a little horrified with the results. Prior to me seeing the copy of the report my LLMD said my MRI was normal. So I guess I will have to aske her what that means.
Posted by bcb1200 (Member # 25745) on :
I was diagnosed originally with "bilateral cortical atrophy of the parietal lobes." Basically an indication of early onset dementia. It has reversed with treatment.
Posted by feelfit (Member # 12770) on :
thanks for the responses, folks. TS, i always think of you, and hear exactly what you're saying. Ellen, depending on your age, it could be a minor thing, but infections can cause loss of volume and neurons too.
Were you having symptoms of dementia, bcb? Very, very encouraging that your condition reversed. thanks for that.
Posted by bcb1200 (Member # 25745) on :
I was having all sorts of mental symptoms that were really neuro lyme and bart.
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