I'm wondering if anyone has confirmed that their encephalitis is gone -- as in with some sort of test like a SPECT scan.
My neuro symptoms are really bugging me again today, and I feel as if I'm a mad man. A lot of it is attributable to encephalitis. I'm wondering what my chances are to get better... documented better.
don't need the "hang in there" talk. Please let me know if you've been confirmed of not having encephalitis anymore.
[ 08-01-2012, 03:09 PM: Message edited by: thehause ]
Posted by derk diggler (Member # 31903) on :
ive been fried for 2 and a half years straight not one break in this **** so good luck
Posted by thehause (Member # 21237) on :
UP... anyone??? would be great to get some hope. not much left, you know...
Posted by thehause (Member # 21237) on :
up
Posted by lyme in Putnam (Member # 11561) on :
Just take hope. Thats all I can say, in the same boat. Maybe spect scan again. Confused daily, not self, I know. There has to be a break in this. Was better last week, so take that as it can happen.
Posted by thehause (Member # 21237) on :
THANKS. I'm in MO, so we're close. I hope someone has been able to confirm the encephalitis has reversed...
Posted by Rivendell (Member # 19922) on :
I'm new at this (Lyme treatment) and while I am not cured, these things have helped me tremendously:
Fish Oil 6 to 9 capsules per day (Keeps me from feeling like I'm going crazy, helps my mood and ability to think. It helps nerve membranes to heal and better commincate with each other. It also reduces inflammation in the brain.) This info is from the book "The Instinct to Heal"
Japanese Knotweed (reduces inflammation in brain and nervous system, blocks exact inflammatory pathways that Lyme uses to proliferate in your body) This is per Stephen Buhner. www.buhnerhealinglyme.com
But, even so, some days are better than others for me. But without these two things, I would be crazy and suffering tremendously.
Posted by BoxerMom (Member # 25251) on :
No SPECTs or MRIs for confirmation, but after 20+ years of constant encephalitis, I now have periods of optimal brain function.
I've been in treatment for 4+ years. Cognitive and emotional symptoms were much worse during treatment than before I was diagnosed. Much worse. Like living in a horrible separate reality.
I still have brain swelling during herxes. But when I'm not herxing, I have a mental clarity that I haven't experienced in years.
Calm, focused, happy, hopeful, creative, energetic - all the things Lyme takes from us.
I do not believe I will have permanent damage from my Lyme. It's hard to believe, with how sick I've been, and the intensity of the neuro symptoms. But my good days really are completely good, with no symptoms.
I hope this helps.
Posted by thehause (Member # 21237) on :
BoxerMom, can i ask how long you were sick and how long you were treating? Or are you still treating? I've been maybe dealing with this a lot longer than you.
Thank you for the words...
Posted by BoxerMom (Member # 25251) on :
Bit in 1990 while in college. Symptoms began around 1993. Went from healthy to very, very sick practically overnight. Neuro symptoms were the worst.
Misdiagnosed for 15 years.
Diagnosed with Lyme, Bart, Babs in 2008. Began ILADS oral abx protocols.
Still in treatment. Current protocol is Bicillin, Mepron, Malarone, Zith, Ivermectin, herbs and supps.
I need lots of meds and herbs to produce a herx. That was not the case early in treatment. I herxed on pediatric doses. Herbs sent me over the edge with too much herxing.
My brain is very sensitive to inflammation of any kind. Herxes, flares, diet, anything. I'm sure my blood-brain barrier looks like a torn up fishing net.
But my brain recovers much more quickly than ever before. Especially with detoxing and supps.
I plan to continue until I am symptom-free. I expect I need another 9-12 months of treatment, at least.
Babs is my biggest culprit. It is lodged in the smallest capillaries of my brain, and hunkered down for the long term.
I need to add or change herbs regularly. GSE is the latest thing to send me into herxville for Babs.
These infections take forever to treat. It's exhausting and expensive and boring and often demoralizing. But when I get my energetic, clear brain days, it is all worth it.
Posted by thehause (Member # 21237) on :
We've been treating for about the same amount of time. I was sick for about 5 years before i started treatment. That's long enough to get some serious side effects and potential long term damage. Sometimes, I really feel like a loose cannon -- like there is no impulse control or regulation. Its very strange.
I'm on ceftin at present and also treating black mold. I've been taking a lot of meds for detox and inflammation -- coq10, fish oil, lithium, magnesium, curcummin, NAC, other stuff also.
It has been unbearably expensive, but I'd give up everything I have just to get back to my regular social self. It's been very hard... sometimes you don't think you'll make it you know?
Posted by lyme in Putnam (Member # 11561) on :
I know hause.
Posted by thehause (Member # 21237) on :
i need to be able to get on with my life. this is a struggle i'm getting tired of having.
Has anyone heard from their doctor that the encephalitis symptoms are permanent??? it'd be great to know if this is something I just need to get used to.
Posted by joahsark (Member # 20598) on :
BoxerMom,
You make my day. Can't get enough of your positivity! Thanks so much!
Posted by bcb1200 (Member # 25745) on :
I had an abnormal MRI with spots / lesions and suggestions of atrophy before treatment. My brain MRI is now normal.
SPECT is greatly improved, but was still abnormal...although that was over a year ago and my cognitive function continues to improve.
Posted by thehause (Member # 21237) on :
bcb -- how long have you been treating??? how long were you sick??
Posted by AuntyLynn (Member # 35938) on :
There IS hope! Please see the latest Dr. S study, showing that long-term IV is necessary to beat Neuro Lyme:
Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease
In conclusion prolonged intravenous antibiotic therapy is associated with improved cognition, fatigue and myalgias in patients referred for treatment of neurologic Lyme disease. In contrast, improvement in arthralgias did not persist after 1�4 weeks of therapy. Treatment for 25�52 weeks may be necessary to obtain significant symptomatic improvement in patients with neurologic Lyme disease.
... And then there's this recent story -
CT man beats 22 year Lyme infection with nine months of IV abx
I had about 4 months of IV therapy awhile back... it was INSANELY expensive. I'd love to go back but the $$$$'s are preventing me at the moment. Unless I can find a cheaper alternative.
Posted by thehause (Member # 21237) on :
anyone else out there know anything about an improved SPECT?
Posted by thehause (Member # 21237) on :
manybites -- your capitalization makes it really hard and strange to read. you might want to change that in the future.
i take curcumin as well. i'll read buhner. i'm not sure why you think the dye will never go away.
Posted by tickssuck (Member # 15388) on :
I was on IV abx, multiple combos, different drugs for 48 weeks. Still looking for a way to improve, sigh. Symptoms are almost exclusively neuro.
Posted by CD57 (Member # 11749) on :
Interesting thought that the killing too much causes the inflammation in the brain. My brain symptoms got bad AFTER I started abx combos. I did not know how to tamp the inflammation down at all. FISH OIL AND CURCUMIN, how about RESVERATROL?
Also, I find what BoxerMom says interesting; " I need lots of meds and herbs to produce a herx. That was not the case early in treatment. I herxed on pediatric doses. Herbs sent me over the edge with too much herxing."
Posted by thehause (Member # 21237) on :
my doc says he has not seem much improvement in terms of encephalitis no matter the length of IV treatment. he says they haven't been able to determine why some improve.
he is starting to look at mold seriously. but he likes to treat one thing at a time (3 years now) and isn't very aggressive. i think its because he's trying to be empirical and write papers. kinda not fair since we're paying for it.
Posted by CD57 (Member # 11749) on :
well that's discouraging. My doc says he has. It's just slower.
Posted by thehause (Member # 21237) on :
I don't know... it is hard to say. i have not wintnessed many people who can confirm they have evidence of it.
CD57... would you be willing to ask your doc again to be sure he's on the same page as us and not just "gut feeling" his answer?
hause
Posted by Bugg (Member # 8095) on :
I'm surprised your doctor said he hasn't seen much improvement with IVs for encephalitis. I could understand that if it were viral. However, for bacterial encephalitis MANY lyme patients have improved with IV treatment, especially IV Rocephin.
I did have encephalopathy caused my lyme. I tried oral abx for it which didn't work. IV Rocephin for 120 days brought back my cognitive functioning. The progress wasn't confirmed via MRIs/Spect Scans but was confirmed by an infectious disease specialist and neurologist upon clinical examination. The neurologist informed me that IVs with encephalopathy are absolutely necessary to cross the blood brain barrier. He said there are no oral abx which can do this.
I will say, though, that I didn't feel totally better after ceasing the IV Rocephin. My cognitive functioning was dramatically better but I had ALOT of residual fatigue, for example. I think I posted on lymenet awhile back that I read it can take years to recover from the fatigue etc of encephalopathy even after treatment. My neurologist confirmed this.
Posted by thehause (Member # 21237) on :
Bugg -- I respect what you're doc said, but it is known that a lot of abx do cross the BBB. Doxy does, for example. It's the density of the crossing that seems to matter more than anything. IV gets more across.
I did IV for about 4 months -- close to the amount you did. I felt somewhat better, but not "back". My mind isn't quick, clear, bright like it used to be (I was a pretty sharp guy if you don't mind me tooting my own horn). I feel off. Emotionally, memory, conectration. Something is still amiss.
It's been about 8 months since I stopped using Rocephin. I'm on orals right now. I hoped it would be the wonderdrug I've been waiting for. It has not though, as of now. Maybe I've been sick longer than you and need more time on it. Wish I knew!