Understanding Lamictal & BFS

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SirTrouserz

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I am currently in my forth week of Lamcital and had a follow up appt. with Dr. Tahmoush today. I found out more about how how Lamictal is supposed to work and additional information about when BFS is an autoimmune condition. This is how I understood what he said. Hopefully I got it right. -I am currently on 50mg of Lamictal and the symptoms that are still bothering me as include; foot cramping, muscle stiffness, internal vibrations, some twitching (though it has decreased), exercise intolerance and insomnia. I will be up to 100mg next week and for at least three weeks after that. -My condition was most likely triggered by a virus containing the same antibodies as are in my nerve cells which triggered the autoimmune reaction and symptoms. (Don't quote me on this one though...that's how I understood what he said)-Lamictal is considered a cure in that we will keep increasing the dosage until I am asymptamatic. That would be considered a cure and then I will taper off of it. Then I should not have to take Lamictal anymore. -Some people will have a recurrence of symptoms if they taper off too quickly or if their immune system is reactivated by another viral trigger. -I should not have to be on Lamictal more than 6 mos. -It would be best for me to try to avoid getting sick or being under too much stress as we try to regain the imbalance that was created in my immune system. -I will be increasing my overnight dosage of Neurontin to try to deal with my inability to sleep more that 5-6 hours at a time which is probably also a result of this condition. You can become immune to the effects of Neurontin over time. -I asked him why this condition is seemingly so rare. He said that it is probably a lot more common than we know, it's just that some people aren't bothered by their symptoms or the symptoms do not become problematic for others as they have with us. This condition, when the cause is autoimmune, runs the spectrum from very mild to very severe. -He got a chuckle when I told him that I wake up with my fingers and jaw moving when I have the flu. He thought it amusing that my toes like to jump around without any influence by me. The whole situation seemed very entertaining to him, as it does to me most days now after living with it for almost a year. Last year I was not laughing though, to say the very least! -He reminded me again that John Newson-Davis was the neurologist responsible for discovering the antibody-nerve cell- BFS/PNH connection. Look him up if you're interested in finding out more about that. That's the latest and greatest from me. Overall the symptoms seem to be decreasing, but it's hard to know for sure just yet. If anyone has any questions that I can try to answer, please let me know.Cheers,Sir_Trouserz
 
Sir_Trouserz the only way I have ever heard of getting ride of auto-immunity is through radiation therapy that eliminates your immune system then it resets.... most of the time. It is very dangerous though. A lady I know is traveling to the East Coast to have this done in the hopes of getting rid of her RA. So is BFS/BCFS an autoimmune illness or are they both an autoimmune disorder and just another illness for lack of a better word? I really hope this does work because I am willing to try it. Who else has gone through the treatment and actually come out sxs free? I don't do well on Neurontin, I get a headache, feel dizzy of course I have only been on it for four days. I also got of of Diazepam. Maybe it's the withdraw sxs that I am having. Hand, check & tongue cramping, various muscle stiffness, internal vibrations, some twitching (though it has decreased), exercise intolerance and insomnia. Plus a torn muscle and ligament that is now 95 healed. Yeah I had atrophy.Does this doctor know what the vector is for this virus? Probably just flu variant to some people. What did he say about VGKC testing if anything?Good luck on this medication and I hope to hear cure in six months. Don't disappear on us if it does work! Zeke
 
Hey Zeke,Nice to see you around again to stir up some trouble. It's been too quiet around here for a while..well, for a little while anyway, I guess I should rephrase that.I've heard from different people that in regards to arthritis there are some new lines of drug therepy that stop any further autoimmune damage from occuring. Those drugs have been successful, so there are new things coming down the pike now used to treat/cure various types of autoimmune conditions. Dr. Tahmoush has been successful with Lamictal, so I have hopes that it will work. He didn't say anything about VGKC testing except for the fact that it's used mainly for reasearch purposes and he didn't appear to have any idea which virus would be the one to trigger this condition. And don't worry, if the medicine works I'll stick around and blab about it as much as I can. You won't be able to get rid of me that easily!
 
Hi Sir_Trouserz,Thank you so much for posting your experience with this. I am going to print this off and take it to my next Neurologist visit. I too believe this to be autoimmune, and so does my PCP. Reason being, I keep coming up with reactivity to certain antibody tests for conditions it would be virtually impossible for me to have, specifically Rheumatoid Arthritis (I have no swelling or joint pain), Lyme Disease (just one of the tests for it though, and I'm definitely an "indoor" kinda gal... no camping, hunting, etc), and Syphilis :oops: (I'm a virgin, so that one's not possible). It was awesome to get a call from the state health department about that last one, as my lovely doctor failed to mention it to me. Anyway, I've got some type of antibody that's registering false-positives on a number of tests, so my immune system appears to be freaking out a bit.A few questions for you:-did your doctor explain how the Lamictal works to cure this autoimmune disorder vs. just dampening down the symptoms? I find it interesting and encouraging that you will be able to go off of it in the future. This gives me a lot of hope, as I'd prefer not to be on meds for the rest of my life (but would do so if I had to in order to feel better)-are you experiencing any side-effects from the Lamictal?-is the Neurontin, in combination with the Lamictal, necessary for recovery/cure or is the Neurontin just helping to control the symptoms?-do you have any other suggestions or can you think of anything else (articles, other info) we should all take to our neuros? I'm concerned mine's going to just blow me off again and up the dose on my beta blocker (which doesn't help that much to begin with)-has your doctor ever mentioned what might cause perceived weakness in certain muscles? I assume it just has to do with certain nerves being "attacked" by antibodies, but was wondering if he provided any further info?Please do keep us updated with your journey. We are fortunate to have someone who is really focused on finding a solution to this. Thank you again!~N
 
Hi Sir_Trouserz,Your very lucky that you have a doctor who listens to you, accepts your symptoms and tries to help you. I have no such luck. The minute my doctors hear of my situation and how it occured (i.e the stress from mum's illness) they just straight away put it all down to anxiety and push anti-depressants on me. I've already been to 2 neuros and am tempted to go to a 3rd because what if my anxiety created some sort of autoimmune problem? The other thing is that the minute I say I've been on the internet, like looking at this website, they straight away won't listen to me. They think I surf the internet looking at all sorts of health websites. I don't. I look at this one and another anxiety site. I'm struggling at the moment. I just wish I could take the info that you've provided to a neurologist and see what they think. Unfortunately they won't view it as something credible. Well I've nothing positive to say about myself so bye for nowMaria
 
Hi Maria,I sympathize with you. I really do. My first neurologist said this was caused by anxiety and I knew that for myself that anxiety was not the cause. My second neurologist just shrugged his shoulders. It seems that many neurologists are not aware of the research done on this condition. Sometimes you have to see quite a few before you find one that's aware of it.I was under a great deal of stress and illness when I develope BFS/PNH. Those definitely factor into the development of the condition many times. In the article above by John Newsom-Davis, it demonstrates that for some of us there is an autoimmune problem. When they did plasma exchanges into various animals, the animals developed this condition. Also, some people here on the site have tested positively for VGKC antibodies, so the proof is there that an autoimmune condition exists and that some of us have it. If I hadn't been lucky enough to find Dr. Tahmoush and been able to see him, I would still feel very frustrated myself. If you feel strongly about this Maria, you should keep looking until you find a neurologist familiar with this or one who you feel will listen to you. I hope that helps.Take Care,Sir_Trouserz
 
My wife and I are trying to have another baby so the possibility of fluid exchange causing BFS/BCFS intriges me. Pardon the question but there is fluid exchabge. :LOL: Does this mean my wife could get BFS/BCFS.Sir_Trouserz, have these animals experinced increased sxs after Googling their sxs? How many EMGs have they had and how many neuro exams have they had to confirm their BFS/BCFS? :p Do any of them self test like walking on their heels, Babinski are they on Benzos, Anticonvulsants etc etc?Back to seriouse mode:Borrowing from my Biology background it does seem rather dificult to have cross-species drawing the same illness from the same "bug." In fact it is very rare but becoming more and more common with diseases such as Ebola, Bird Flu, AIDS and Mad Cow.Now we did get a lizard just before I came down with BCFS and I have been a loyal husband to my wife but I noticed that *beep* llizard always looked at me with a grin after I got home from work...laying their everyday by the heat lamp as if on the beach. I think I need to talk to my wife but I came down with BCFS first. She may just be hidding it better. :eek:
 
Zeke, you remind me so much of Basso with this last post. I'm smiling to myself and I hope one day he pays us a visit again here. Measnwhile, glad you stepped up. :D)
 
Zeke, ignorance is bliss where this condition is concerned, so I hardly think any of the experimental animals were doing the babinski or any of the other things we feel compelled to do here given that a little knowledge is dangerous for anyone with a neurological condition - even a benign one. I don't know what you did to your lizzard, but I firmly believe in respecting the privacy of others in their personal lives. I didn't make up the studies..they've been documented and published. ie;Autoimmune Disorders of Neuronal Potassium Channels JOHN NEWSOM-DAVISa, CAMILLA BUCKLEYa, LINDA CLOVERa, IAN HARTa,b, PAUL MADDISONa, ERDEM TÃœZÃœMa AND ANGELA VINCENTa aWeatherall Institute of Molecular Medicine and Department of Clinical Neurology, University of Oxford, Oxford, United KingdombDepartment of Neurology, Walton Hospital, Liverpool, United Kingdom Evidence supporting this hypothesis includes the increased association of APNH with autoimmune diseases...the response to plasmapheresis, passive transfer of APNH to experimental animals by patients' plasma or immunoglobulins, the action of their serum on VGKC currents studied in vitro, and the presence in many patients of IgG antibodies to VGKCs."And I hate to break it to you Nancy, but Basso really has moved on to bigger and better things, so you probably won't see him back here anytime soon.Cheers,Sir_Trouserz
 
A reprisal of the literature posted by Basso:Mein Gott in Himmel, yes, now our beloved bratwurst is wurst than ever. Scientist in some sexret, I mean secret Bavarian laboratory have discovered that certain Bratwurst, when made out of the Wild Boar, twitches. Apparently, when processed, Boar meat releases a kind of stored energy, akin to the theory of entropy. This destroys peptide chains, and amino acids are rent asunder, making quite a mess for our microscopic folk. This packet of energy is released upon cooking the Wurst, and twitching commences. It is self-limiting, but as a phemonen should not be discounted. Many people have died when a seemingly harmless Bratwurst has twitched down their throat, cutting off their air-way. Wurst Cooking Ever, Vol 101, Issue 1, 333-666Copyright © 1954 by Deutcher Scientifisch Bundesschweine‘Continuous muscle fibre activity’ in Bratwurst made from Wild BoarL. Van Schinken DVM, PhD, DipECVN1, S. *beep* DVM1, I. Polis DVM, PhD1, K. Trychinosis DVM2, 1 Really Small Lab of nut jobs. Bavaria2 Institute of Any Wurst will Do3 Wurst Consulting Services, The Matterhorn, Schwiez4 Wurst Pathology, Pomme Frites, and Pizza Lab. MunchenContinuous muscle fibre activity was observed in a Bratwurst, Jagdwurst,Weißwurst, and simply de wurst. The clinical signs consisted of episodes of generalised myokymia which developed into sausage stiffness and delayed muscle relaxation and generally led to the wursts to slide into throats with death in the eater being the result. Scientific explanation for such sausage twitching can be summed up, as was summed up, by no less than ten scientists with the expression...Hmmm. The consternation conferred by said "hmmm" should not be over-looked, underestimated, or forgotten after five steins of Bier at the Oktoberfest. After a sixth beir, no one anywhere in the universe expects you to remember anything...Oktoberfest steins being just that big.
 
Yes, I can see the humor in it. I really can. However the fact that people here really suffer fron an unknown, untreated and confusing and painful condition makes me loose perspective on all the funny stuff. I tend to take that pretty seriously and think considering the fact that you would be hard pressed to even find a neurologist who knows any of this means we have to be real familiar with it ourselves. I guess because I talk to someone everyday that is confused and suffering I tend to be impatient with people who just want to make jokes or give misinformation. I don't find that funny.
 
I'm on your side Sir_Trouserz. Make it funny is nice but not on this topic. I think you are doing wonderful research for all of us. Besides this I don't like jocks about nationality or their manners (Germans). Maybe I didn't get the point!?
 
Sir_Trouserz talk to me again after the Diazapam wears off. I advocated the same thing as you did a while back and you do great work in researching this topic....for people to take this as a real illness which it is. But is was Basso who pulled me out of my tailspin into despiration among others as I suffer with this illness which is fueled to higher levels by anxiety. I guess what I am saying is that we or at least I am trying to take a very positive attitude about my condition since my cramping will not let up. Sometimes my tongue gets so stiff I can't even talk to my wife which she hates. I have also had that almost what to chock feeling when I eat. It goes away then comes back. You know the drill with BCFS. I tried the Neurontion but It was to strong for me. Presently I am tappering off Diazapam.I have an iPhone a will begin to read posts every now and then when my cramping flares up. My wife says I don't talk to her and I explaned that when I get to reading the psots on this site it means that I am having a flair up. Many posts that have sustained me have been yours. So please don't be upset because we know how wonderful you are.
 
Now I can't hardly stay mad Zeke if you say nice things like that. Here I am getting all irrate and you have to go and take the wind out of my sails. I know you were just kidding and I take this maybe a little too seriously, but a year ago I was an absolute wreck over getting this condition and the bad treatment I got from my first neuro. I know you've been through an awful lot with this condition as well. I know eveyone here does what they can help one another, but sometimes it just doesn't seem like enough when I talk to people who are so upset on a daily basis. It's a very difficult condition to have and get treated. And besides, didn't you see I'm on Lamictal?!Thanks Slavin...you have done a lot to help people too and it's wonderful that you have stuck around here for so long. I'm sure that's very reassuring for everybody here - myself included.
 
Now comes the real stuff because I am interested. How does auto-immunity come across species. This implies a massive biological upheval in the animal kingdom. This is then an illness that knows no bounds and apparantly can cross species which I don't know of anything organic that can do such a thing but I am not a medical researcher by any means. Autoimmunity across different species to the Ka and Na channels in different species is very difficult to concieve even for me and my history in DNA analysis. Back when we were using ANCIENT restriction enzymes to split DNA at the very rudametary level not like todays more targeted cuts. I need to revisit some of these reads for a sanity check. Send me more. I am intrigued at the posibility of being a vector for this illness.
 
I bet the woman I know who was hospitalised by this would have fell out of her bed laughing at such a funny post - probably cracked a few ribs at the same time just to add to the hilarity. And I'm pretty sure the mother of the two year old who was so frantically trying to find out what was wrong with her son would, out of common decency, taken time out for a good old thigh-slapping sidespliterIn fact. The more I think about it, I'm sure she would, after all. When you've gone from one neuro dept to another, to another, to another looking for answers to what's happening to your two year old. Who wouldn't want a dam good laugh and joke. No, I'm sure I'm right..
 
I think that humor is an excellent way of putting things in perspective...I thought Zeke was funny and apropriately so here. I always thought Basso had an amazing way of using humor to help us all cope and Zeke's post reminded me of the brat study post. It was not meant to offend but to remind us that BFS/BCFS is a benign disorder and that while our suffering is problematic, it is the one thing we can choose to overcome even when the symptoms remain quite painfully present. I work on a daily basis with those afflicted with things like stroke and MS and you might be surprised at how often you will hear someone making fun of their situation. It is empowering and therefore takes the pressure off of us to have to take ourselves so seriously. If that makes sense...
 
Well, Steve...let's hope the two year old won't have symptoms when they grow up and there is a chance (if it is BFS/BCFS) they won't. The symptoms go away for some of us. Meanwhile, there are loads of exchanges on this forum with the purpose of helping one another cope. If we don't find someone's efforts fruitful, we can pass over them. You are right, not all appreciate humor and so they are free to skip what they don't find funny or useful to them. And they can reflect on what they do find helpful. I never proposed that humor was the only way or the best way but neither is it for "private" use only. It has a place here.
 
One problem with BFS/BCFS is that there are hardly any neurologists that know about the various causes of it and, if they do, few take the time to explain them to their patients. So as we see day after day on this site, people are very confused, scared and sick. In my mind then, making fun of what little evidence there is that helps explain some of the causes and symptoms of this condition not that funny or helpful.
 

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