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Immune System - looking for some advice

PostPosted: October 4th, 2002, 7:51 pm
by quizhost
This is a bit lengthy so I hope it's ok to post in this forum - I am about to try some supplement so thought it best to post here.

I only found this forum last night and found what I believe to be the most important paragraphs I've read since I started twitching 11 years ago - not because they provide a solution but perhaps finally a reason and a link which may enable me to take the next step to finding an answer. If you've not seen this post you can find it half way down the following page on the old board: ->

http://web.archive.org/web/200109080841 ... .php?sid=8

The post is by JohnV and it looks like this person ran the last board and maybe this one? Perhaps someone can fill me in on this - I'd be interested to hear this person's thoughts on my post and of course anyone else on this board.

Anyway I'll get to the point. I've read many times that those with BFS seem to trace its beginning to some sort of viral infection. I know exactly when I started twitching - it was as I said above 11 years ago. I was a heavy drinker at that time and did drugs. One day I was drunk and did LSD - I had a bad reaction and spent many hours suffering convulsions. It was enough to put an end to the drink/drugs. From that moment on I was suffering twitching - initially very intense and painful. I tried to seek help or advise but as you can imagine as soon as I mentioned the LSD I was considered a lunatic - 'all in the mind young man'. To a certain extent I have to believe that was true.

After 5-6 years of trying to understand what was happening I went to see a neurologist. I did an ECG and was diagnosed with BFS. It was a breaking point for me and I subsequently broke down. My trusted GP put me on an anti-depressant (quite correctly) and I was able to gradually put the thoughts on finding an answer to the twitching on hold. My GP said the twitching could be labelled under the depression umbrella and as I was finding my feet again on the meds I was prepared to accept it.

I've been on the medication ever since but am on such an low dosage now (< 10mg) that it's hardly worth bothering with. My life has been great and I've just accepted the twitching and the discomfort that it has continued to cause me all these years. I should just get on with things but I do mathematics for a living and am always looking for solutions - so when ever I have an episode where I'm having painful/uncomfortable twitching I will spend a few hours checking the web for any new info that might convince me that it's not just depression. (I honestly have to be the least depressed person imaginable these days!)

That's what happened last night when i found this website and that post I mentioned above. It was like fmaking a step forward in a mathematical proof. This is why I felt this - LSD suppresses/shuts down part of the immune system and can lead to a weakened immune system. Now as far as I know this usually only happens with prolonged use - I was a one-off user and had a bad reaction and have twitched ever since. Now I appreciate that perhaps I'm behind all you board members in appreciating that BFS is somehow linked to a weakened immune system but to me it was new and a revelation!

What's the solution? - I don't know but this has to be a step forward and I hope JohnV is still investigating. The first thing I did was do a search on topics which covered strengthing the immune system - has anyone heard of Beta Glucan? I'm trying to get my hands on it - perhaps someone has read this and knows I'm wasting my time - great! please tell me - if not I'll let you all know how it goes. My medical knowledge is practically nil and it only took 5 mins of searching the net to come up with this supplement so I admit I'm clutching at straws.The other factors which JohnV mentions I can relate to 100% e.g. stress increasing the symptoms and meditation reducing them.

Thanks for permitting this post and I'll be around this board if anyone wishes to chat - good luck.

Yeast Beta- D-Glucan and BFS

PostPosted: October 5th, 2002, 3:40 am
by Dr. Jon
Quizhost, Beta-glucan does appear to have immunomodulatory properties.
Studies have shown that it can bind to macrophages and neutrophils, (natural killer cells,) which are some of the cells needed to fight cancer cells. Interesting beta-glucan has also been found to lower total cholesterol as well as to increase levels of hdl cholesterol. I am not aware of any contraidications to taking it or any side effects other than that it is expensive. The company that manufatures it i believe is nutritional supply corp. i believe you should be able to find it in a health food store. I have tried many different supplements, and am very familiar with most of them. Let me know if you try it and how it works for you.

PostPosted: October 5th, 2002, 4:16 am
by tlotoxl
I've never heard of LSD weakening the immune system, though I can easily believe that the lack of sleep/stress it can cause - even in just trial - could be enough to weaken the immune system. Hmm, more stuff on LSD-related disorders at http://www.stormloader.com/hppd/ for those who can stomach reading some pretty crazy stuff.

So do you feel that BFS is caused by a weakened immune system or a confused immune system? If it's similar to a disease like MS, wouldn't that suggest a hyperactive/confused immune system -- and that a treatment might even involve weakening the immune system? Regardless, I eat my vitamins like a good boy and try to get as many fruit as I can.

PostPosted: October 5th, 2002, 5:29 am
by Davidd
Quizhost--

I have no idea regarding LSD's effects, but i completely understand your mathematical approach to finding answers. I am a research analyst so maybe this plays a part.

My twitching stated back in early August after dealing with some numbness and tingling in my hands and feet. Unless I didn't realize it, I don't believe I had any sort of virus at all...i.e., I wasn't sick and had no symptoms. So unless I just didn't know it, I don't think my twitching started from immune system issues (although one never knows for sure!).

I have had some bloodwork done and an EMG and nothing was found. What is strange for me is that when I do this back machine exercise at the gym (the one where you lean back against some resistence), the twitching in the calves goes crazy.

I am willing to try anything to get rid of the twitching so please keep us informed if you discover anything.

--David

PostPosted: October 6th, 2002, 3:00 pm
by quizhost
I like the idea that the immune system might be hyperactive and therefore some form of weakening/dampening down maybe be a help rather than looking to strengthen.

I'm open to all suggestions given my limited medical knowledge and although I'd rather do without this BFS business I'm sort of enjoying reading all the posts and feeling part of a community that is searching for a solution to what appears to be a very unique/bizarre problem.

I'll be back once I have something relevant to post - thanks for the comments.

PostPosted: October 8th, 2002, 9:37 am
by Nole
I have always been the type of person that catches whatever is going around and have suffered with sinus infections, colds, cold sores, ear infections, strep throat, throat virus, and the flu off and on since I was a kid. Every year I get at least 1-2 bouts of strep throat or a good cold, and often something else is thrown in their as well. I know I have a weaker immune system, so I often wondered whether this BFS stuff has anything to do with that. I did have 2 strong viruses right before the BFS. One was in March 2002 and after that virus I had tingling sensations on my face alot, but no twitching. In May 2002 I had a bad throat infection, not sure if it was a virus or a bacterial infection but hte doctor did treat it with antibiotics just in case. It took anout a week to clear up, I had a hard time talking, at that time my puppy almost died and school was coming to an end (im a teacher) so I was under some stress as well. A week later the twitches began. I think it was brought on by the sickness. Let me know if any of you hear anything else on the immune system. I am feeling great now, I take a high potency multivitamin and dont think about them. There are some days when I dont even think I have them anymore. I feel like they are working themselves out of my body like a virus would. I hope it actaullly is.

PostPosted: October 8th, 2002, 9:57 am
by quizhost