Has anyone heard of a myelin sheathing repair drug. Supposedly, this new drug is a combination of three vitamins which are reconstituted and are able to then cross the blood brain barrier. Once they cross, they are able to repair the myelin sheath. This could be very valuable to meningitis patients whose brain has suffered damage because of the damage done to the meninges.
Thoughts?
Silver Charm
Would this not be for the damage caused to the myelin sheath by MS?? Not sure if it would work for other types of brain injury/damage??
Certainly research has focused on myelin sheath repair in MS but there's no reason to think that it would not also be beneficial for other disorders involving neuronal/axonal degradation or in diseases such as meningitis. I am fascinated to hear more if anyone has any further information.... Thank you for posting about this Silver Charm and I hope you and everyone else on this forum is doing ok
Hi ShannanLouise thanks for your explanation. It certainly is very interesting progress and be very good to hear how it progresses. Am also curious to know what Country SilverCharm is accessing this. Can't imagine it is going to be readily available in my remaining life time and probably be for those just sustaining a brain injury rather than those further on. ShannanLouise have you also sustained a BI due to meningitis?
Hi Strawberry Cream, I had BM in March 2013 and am have constant head pain. But it is very very slowly improving so that I can now walk again and read and bear daylight. It sounds as though you are still suffering seriously following your meningitis and my heart goes out to you. Best wishes, Shannan
Hi ShannonLouise. Thanks again for your reply. Constant head pain must be extremely difficult to cope with and as you describe it affects other activities. Oddly before BM I used to suffer migraines that were very severe and would make me vomit and have to go to bed in dark and quiet. For a number of months after BM I had a constant bad head pain but after a time it went away and now I don't even seem to get headaches. Yes, I suffered a severe frontal lobe brain injury and struggle with all the problems of dysexecutive/frontal lobe syndrome. I have adjusted to ways to help me manage day to day life and single parenting but the thing I can't seem to do anything about is my emotional lability - my mood crashes for no apparent reason and my tears spill out far to easily. I now avoid social contact as a coping mechanism. Ditto best wishes
That is really so tough. I'm sorry to hear that and hope that given time you will improve and get back to your old self. I will think good thoughts for you.
Hi ShannanLouise,
I am really happy to know that you are slowly improving. Things will be far more better in upcoming time.
My fiancee was in very bad condition a year and 4 months back when she contracted tb meningitis but now she's much better mentally. however she has very few memories of her last 4 years and these last 4 years were when our relation started. But I'm always hopeful that she'll remember those days as well. Her headache is almost not there. But she's still not able to walk due to spasm in her right arm and left leg. I am very much concerned about this.
Please give me advise so that I can help her best as possible. What can be done for this spasm and did you also face all these issues?
I have created a question on this forum and requests you to kindly reply to me with your precious advise.
Thanks and regards,
Anuj
Hi Anuj,
I've seen some of your posts about your fiancee and have been saddened by how difficult it has been for you both. It's really so good to hear that she's now improving. I too had difficulty with my right leg, particularly pain in that knee and difficulty bending it. It was especially bad at night. Still now, 20 months later it still hurts at night, but during the day it is mostly fine. I don't know about your fiancee, but mine improved by giving it time and by gently exercising. I haven't had any memory loss. It's good that most of her memories are intact and maybe her memory of the last 4 years will also slowly return. It would surely help if you talk to her of your times together as that might help jolt it back. I will keep you both in my thoughts. You have been a wonderful man to stay by her side throughout this ordeal and I wish you a very happy future together. I too have been incredibly fortunate to have such a loving, kind, caring husband who has not let me down once and has been by my side ceaselessly.
Shannan x
Please keep guiding me as I want to do my best to help her recovery. Her major issue is spasm in right arm & left leg. She was very colorful and charming and we are soulmates. I can't imagine my life without her.
Please keep guiding me to help her best as possible.
Thanks and regards,
Anuj
I think it would work for ANY brain injury, nerve damage, including concussions etc. The beautiful thing about the potential is that the "drug" is not a drug at all but vitamins which have been reconstituted to cross the blood brain barrier.
I am going to a consult on it soon and will start the therapy shortly thereafter.
I don't think it could hurt anything.
Will report more after I talk to the doctor.
It'd be great to hear more when you find out more, or even better when you start the treatment yourself SilverCharm. I wish you the very best with it and with your recovery. All of us would I'm sure appreciate news of how it affects you. Kind regards, Shannan x
Hi Silvercharm,
Thanks for your kind information. This medicine can do wonders for many.
My fiancee, 23 yr old, suffered tb meningitis around 1 yr and 4 months back. She's better mentally but can't walk yet because of spasm in her right arm and left leg. She's getting pt but never involves herself as she is fearful of walking and falling. I hope this medicine will be beneficial for her as well. Can you name that medicine?
I can see that she is gradually improving and have faith that she'll be fine one day. But Please advise me what else can be done for my fiancee? As your advise is very precious for me to fight for my fiancee.
Thanks and regards.
So I am now realizing SilverCharm that this is not just something you have read about but you have been informed about it and under medical review for starting the therapy. Be interested to know more about what countries this is available in, is it accessible to all or who is making it available etc and more about the research etc. I have quite extensive frontal lobe damage following BM and the other problems at the time - abcesses, strokes, cerebritis etc. How did you hear about it and is it being tried out by the main medical professions or alternative drs??
Will post more as soon as I start the treatment and know more.
When you are going to start this treatment. Please let us know with more details.
Hi Strawberrycream,
I hope that this drug will help all. I'm sorry to learn about your ongoing issues and hope & wish they'll resolve over time. I'm always grateful for your kind support during my worst time of life, you always showed me a way to help my fiancee. I appreciate your help and will always be grateful for this.
Thanks & regards,
Anuj
Hi Anuj
It is very good to hear that your fiancées recovery is continuing and as for us all it is a process that goes over years rather than weeks or months which I now think you are much more understanding and accepting off. It is a credit to you that you have so faithfully continued to love and cherish your fiancé and too be so dedicated to supporting her recovery in what ever way you can.
Thank you very much for your kind thoughts and wishes for my recovery. I too have come a long journey of progress but do understand that although further recovery may be achieved it is never going to be complete to as I was pre Bacterial Meningitis & Septicaemia. I have had to learn other ways of managing life particularly in relation to my frontal brain injury that I sustained which challenges me with cognitive, emotional, social and behavioural issues.
My continued best wishes to both of you.
Ok, I have been to the Dr. and started this new pill/vitamin/drug. Its not really a drug but it is supposed to help with mild cognitive impairment.
The pill is called Cerefolin NAC.
Thought I would post again here because this is where I first mentioned it.
Happy Thanksgiving week-end to all of us in the US.
Happy Friday to those of you in the UK.
SilverCharm
I have been taking this medicine for about 6 weeks now and I think that I have seen an improvement in my overall cognitive functioning. My wife says that she believes it is working. I am able to play poker again as I have not been able to do that since getting sick.
The name of the prescription vitamin is Cerafolin NAC. It makes the headaches a little worse at first, but it is a different sensation than normal. Those symptoms reappear from time to time but like I said, the sensation is different from the normal headaches. I think that is the medicine working as it repairs areas of the brain where damage has occurred. As I said in another post, this treatment is an experimental way of treating Alzheimer's and mild cognitive impairment and we won't know if it prevents or delays Alzheimer's for another 20 years, but if it doesn't work, all I've done is given myself extra vitamins.
Good luck to anyone else that tries it, I would recommend it to anyone still suffering from headaches.
SilverCharm
Amitriptyline
Acute Bacterial Meningitis 
Neurological discomfort. 
