posted
I would love to know what to expect with brain recovery. I have my active infections under control now and my brain is clearing, but it seems like a slow process. I would love to hear from folks further along in recovery from neurolyme. What can I expect? How long does it take? Ups and downs? Get to a point where things really start to come back together? Any suggestions? Thanks in advance.
Posts: 73 | From ID | Registered: Jul 2008
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adamm
Unregistered
posted
Same. Mine's done nothing but get worse since my tick bite
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I am not sure how long it might take for you to feel this type of recovery. When my active infections cleared, my brain seemed to heal fairly quickly. If it is not healing quickly, perhaps there are some other minor issues still to address. Or perhaps there is some detoxing still to be done such as metals. My last issue was fungus/metals.
When all was clear, I felt a very natural clarity, calm, and even joy. Completely natural... no having to work for it as I used to have to do. I suspect this is how we are all supposed to feel, as human beings, just as a basic foundation.
It is great that you have cleared your major infections and hopefully things will improve soon. But if not, seek out the advice of your health practitioner because there may be something else in the way. My advice would be not to accept just 'better' but to keep going until things truly feel normal.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Claire, Great to hear of such success! How long was fairly quickly? a day? a week? a month? several months?
Posts: 73 | From ID | Registered: Jul 2008
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
In my case, the more my infections reduced, the more 'light' I felt when in-between my protocols until they were not necessary. From start to finish, this process took two years, but it was in the second year that I felt more health in-between protocols. And the strength that I felt simply became more pronounced as time went on. It really wasn't like... okay, now my infections are gone on one extreme, and then I wait now for my brain to repair itself... in my case, the brain seemed to be repairing itself along the way as it was more and more free of the infection.
So hopefully you are feeling some kind of positive change if your infections are clear or greatly reduced? Check for other possible obstacles if not.
But we are all different in how we experience this illness... my experience may not be everyone else's. I guess that I just hope that it would be. *I also don't want to give an impression that there is or will be no more work to be done. It is not like that either. The bulk of the work can be behind us, while still revisiting our protocols from time to time.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I believe some brain injury can come from lyme spirochetes, and other from lyme coinfection viruses.
I got great results from a homeopathic from DesBio called LYM. It contains treatment for two lyme enciphalitis virus coinfections.
I don't know how I managed before. Now I can think clearly, put together sentences, and remember directions.
I never had a brain scan, so I don't know about lesions or how much damge was actually done.
I'm still not quite as quick with the turn of a phrase as I once was, but nothing much to complain about.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
It took almost two years for me to get most of my
Word finding abilities back.
I still have some groping and searching, but not like before.
I can now multi-task most of the time as well as
Remember things said to me five minutes earlier.
I've done Lyme, babesia, bartonella and viral infection therapy.
Back to Lyme right now due to dysautonomia issues.
I find the more fatigued I get, the more the neurological issues come out.
That would be consistent with any type of brain injury or involvment.
I've done neurological rehab for cognitive, speech and language,
Swallowing and more as a Speech Therapist for 17+ years prior to Lyme.
The brain cannot grow new brain matter.
You are born with a finite amount of neurons (brain cells).
However, if swelling causes disruption of information
And the swelling goes down, function can return.
The brain can "re-route" itself and create new pathways.
You can stimulate different areas of the brain to take over
Function from a damaged part.
I did not get a spect scan.
I just don't want to know.
In the end it doesn't really matter as long as you realize
How plastic and remarkable the brain is and that more
Than one specific area can and will take over the function for another.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
fyi, antibiotics did not do much for my brain/ mental health. The rife machine is what has helped me in that area the most.
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This week, especially today, I woke up and felt like my eyes were WIDE OPEN. I mean, it just felt like they opened wider and could take everything in.
Also, my processing speed is faster and I am way less fatigued. It feels like my brain is kicking in.
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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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Brain recovery has been very slow here.
3 years and I still find that too much stimulation and my brains shuts down.
Reading Wimenin's link on brain recovery was incredibly helpful.
Hoping that all of our brains continue to heal, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
My favorite aspect of my brain working is having words or names I want to remember "pop" into my head. When sick, not only could I not remember things, but it was too exhausting to even try to remember them.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
I experienced it as a slow process. It's on looking back that I see such a huge difference.
I still get tired and get that brain fog, but only when in a lot of pain and very tired. I dont think it's the bug anymore.
I also still have word finding and mood problems.
But it is so wonderful to read a book, and professional journals again.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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adamm
Unregistered
posted
Up-- in particular for anyone who has/knows of anyone who has gotten it all back...
If it's any encouragement, BTW, I personally know someone who, after a stroke, was told by four top neuros that he would never walk again, but now only has a very slight limp in one leg (which he says is continuing to improve)...
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posted
Our brains do have wonderful abilities to rewire and rebuild. I belong to a brain trauma support group and see many people improving from car accidents, infections, etc. far beyond what their docs predicted.
I do have hope, but I wonder how long to expect. This recovery is already much longer than I ever expected.
My progress is a slow bumpy road up. I'm nowhere near my capacity before lyme, but I am far improved from my worst. It's good to celebrate the small advances.
I also have a wonderful brain-trauma experienced physical therapist who gives me exercises to help retrain my eyes, balance, etc.
Good luck to everyone.
Would love to hear more from others about their experiences, what helped the most, how long it took, etc. Especially from anyone who has it all back!
Posts: 73 | From ID | Registered: Jul 2008
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Remember to Smile
Unregistered
posted
Thanks for sending this "Up", triathletelymie. I appreciate reading everyone's posts here.
Brainspud, I'm intrigued by the idea of a brain trauma support group AND a PT with brain-trauma experience. Did your LLMD line you up with those, did your PCP give referral, or did you hook up yourself? I'd like to pursue similar here.
I agree with others that challenges get worse if overtired and/or stressed, and we'll need to continue healthy living principals to stay well.
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I just wanted to point out that we can and do grow new brain cells. It had been thought previously that we were born with a finite number of brain cells, as Geneal mentioned above. However, scientists now know that we can grow new brain cells. The process is called "neurogenesis".
According to Wikipedia:
"Adult neurogenesis is a recent example of a long-held scientific theory being overturned, with the first evidence of mammalian neurogenesis presented in 1992."
Elizabeth Gould, who rediscovered neurogenesis, has done some fascinating work in this area. For example, in a short article on her website she writes that:
"Now we know that the adult brain exhibits a considerable amount of structural plasticity, including the addition of new neurons as well as changes in the connections between existing neurons."
She also exmplains that in her current research:
"We are trying to answer the following basic questions: How do hormones modulate the production of new neurons? What types of experience affect new cell production? What are the mechanisms that underlie hormonal and experiential modulation of structural plasticity? What possible role could late-generated cells play in brain function?"
There are also a number of very well written and interesting books exploring the plasticity of the brain.
Please forgive this long post but I just wanted to let people know that their brains can rebuild, even after lyme.
Tracy -- I am so very happy to hear that you are feeling better. I think Dr. W is great!!
Posts: 40 | From New York | Registered: Mar 2010
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sutherngrl
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Member # 16270
posted
My doc says that 80% of ppl can reset or rewire their brains if they treat the brain disorder. 20% will end up needing psych meds probably for life.
He did say the brain is very plastic and capable of healing; but once the nerves are burnt(that's not the exact wording he used), that there is no way to repair them.
Thats why its so important to treat the brain disorder along with treating the lyme. Many ppl wait to see if the brain damage heals on its own as the lyme is being treated; and with some I guess it does; but to be on the safe side you need to treat both.
There is also some research that says in rare cases, just treating the brain disorder alone can relieve the body of enough stress that the body can actually do its job properly and overcome LD without antibiotics. I guess in rare cases???
Also this study says.....that ignoring the brain disorders brought on my LD, can put a ton of added stress on the body and make it virtually impossible to overcome LD.
So although I have always been against psych meds in most cases; I now have decided that it is a very neccessary part of my recovery. I can tell that when I take mood stabilizers that my fatigue improves by at least 30% to 40%.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
When I was really sick I would see someone I knew and not recognize them. Once I even thought the person looked like who they were but I did not realize it was them. I was very confused and forgetful. I even forgot my son's name for a moment. I was thinking "now what in the heck do I call him. . . "
My short term memory is still horrible. I tell everyone not to rely on me remembering anything. I need a call no matter how many times we do the same thing at the same time, of the same days every week.
But I can remember a little better and when I do remember a person's name, I literally feel like a genius. I am so proud of myself.
The bartonella brain problems were feeling completely aliented from myself and life, like a zombie. Word recall was bad too. When I came out of that it was like walking into the sun, feeling the breeze against my face and smelling the flowers all at once. It was blissful.
But I am in and out of bart. Can't keep it together. I know I am sliding when I feel irritated with a "why bother" attitude. I know that I am on my way up when I feel motivated and excited about doing something, even cleaning the kitchen.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All--
Loss of memory and speech control was one of my earliest symptoms- simple math was impossible-
With treatment about 75% of my brain power is back but I dont think I will ever be 100% again-
ONLine you can watch the- Charlie Rose show- he has a 10 part series on the Brain--
Its is Very good and will set your mind at ease about getting your brain function back-
The short answer is your brain can Heal - there are ways to make it happen faster that they talk about in the program series-
--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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onbam
Unregistered
posted
More and more they're finding that that everything they told us about brain damage being irreparable is simply false; people have even been found to regenerate neurons. We have our own evidence of this in the improvements we see in the scans of treated patients.
My brain recovery came when I treated with Mepron/Zith, and has continued since then on and off meds. I had 3 negative Babs tests.
In my case, it happened very slowly, but I just realized one day that my mind was functioning much better than it had been several months ago.
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Andie333
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Member # 7370
posted
My diseases went undiagnosed for years, and when I finally started antibiotics in 2005, I was in pretty bad shape. That first month of orals changed everything...for the worse.
Neuro symptoms, for me, were the most awful. I'd previously been a correspondent for a popular international magazine. With Lyme, I was unable to remember names, faces, conversations, sometimes whole blocks of time. I was incapable of writing a coherent sentence.
I stuttered badly when I spoke, had two full bouts of paralysis, a lot of sensory distortion (couldn't eat fish or listen to music for several years). For a brief time, I had seizures.
Some of the very worst of those symptoms--the seizures and paralysis, mostly--were pretty short-lived...only a few months.
Other things took much longer to heal. I've been working full time for a company for the past three years. The first year I was there, it sounded to me like business meetings were all in Danish. I struggled just to stay afloat.
Then, month by month, I'd see these subtle differences. Being at work definitely helped by creating a situation where I had to think and function. I also did a lot of brain games (still do).
I'm not the scrabble whiz I used to be, with the remarkable memory for names, faces and conversations, but at this point, I'm incredibly grateful for all the progress ive made (and it's been a lot).
For me, just trying to stretch myself but still being patient was really important.
Hope this helps!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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