Brian, I'm not offended. I don't take "herbal" medications, just to clarify that point. I only take Mestinon for my MG, just like you.

I do want to also clarify that Betaine HCL is not an herb and does not have a "Placebo" effect on me. It is made from sugar beets. Pepsin made from pork. Without it, I can't digest my food. I get very bad reactive hypoglycemia from the "dumping effect" of undigested food going into my small intestines. I get more frequent infections. My GI tract would be full of food peutrifying; not a very healthy situation. And given my family history of GI tract adenocarcinoma, no one could tear that Betaine HCL away from me. Or my acidophilus.

The B12 methylcobalamin I take daily I absolutely need to take or I'll end up with a deficiency again.

Which brings up another topic. My insurance doesn't pay for these two "drugs" (Betaine HCL and methylcobalamin) but I need both to stay healthy. The only reason they don't is because they aren't prescription drugs. I should not have to pay for them. Western doctors don't write prescriptions for anything not from a drug company. Eastern doctors do.

I could go on and on but it doesn't seem fruitful to do so. We will indeed have to agree to disagree.

Annie

Nicky,
This is getting off the subject but I was wondering since you take Pred. are you also on a preventative antibiotic? The Pulmo put me on a preventative dose of 100 mg daily. Just wondering if that is standard?
Kendra

Hey Kendra,

Nope. I am not on a preventative antibiotic. I was only prescribed prednisone and Mestinon. I was supposed to start Imuran aswell, but I couldn't as I have really bad anemia right now.

Just a bit of FYI, make sure you eat a lot of plain yoghurt and/or take acidopholous because long-term antibiotics kill good bacteria which can cause an overflow of yeast- especially since you're on prednisone too...

I will ask my doc. about the antibiotic...I'm a bit curious now...

Ttys!
Nicky

thanks Joanmarie,

I was in complete spontaneous remission for 15 years, and I can reassure you that positive thinking had nothing to do with it. it was mere luck. in fact I was admitted to the hospital in a pre-crisis state, and while they were debating on what should be done, I just got better from moment to moment, was discharged with no treatment, told that I have "med. student's disease" because it is "impossible" to have MG and recover like that, and was mostly overwhelmed with the whole thing. I kept on taking mestinon as "placebo" for another few months. (without it, I could have never passed my exams) and gradually required less and less, until I could stop it all together.

as to your other question, I really don't know why neurologists and neuro nurses can't comprehend the fact that normal people have normal emotional responses among which are anger, sadness, fear etc. I can reassure you that I, the physicians and nurses that work with me, and many other physicians and nurses that I know, don't think that it is abnormal for a patient to feel angry or sad or anxious from time to time. in fact I am quite concerned when a patient does not show some normal emotional responses to what is happening.

the head of my dept. would constantly say to us, during our training- you have to realize that when you tell a patient who was a completely healthy person that he/she has an illness, you are throwing a brick on their head, and you have to be very gentle and thougtful when you do that. and a relpapse of an illness is even worse then that, because it is always accompnied by a feeling of failure, and also the fear that if the disease returned once, then this could happen again.

I also, don't think that it is very beneficial to tell someone that he she is "depressed". this in itself can make a person depressed eventually, even if they are not. and even when I have patients that I think may have depression, I am very cautious in making this diagnosis and wait a while to make sure that I am not wrong, and this is not just a short reactive response that will resolve in its own. (like will happen 99% of the time).

as to "hope" I fully agree with you on that, and that is one thing you should never take away from a patient, or anyone.

and last but not least.

you say- hats off to those that put on their makeup or dress up for "work".
it reminds me that during the conference I attended recently, one of the participants came to me and said how much he admires my courage, coming there, and presenting my work . I was quite surprised when he said that, and told him that there is nothing to admire, I am just trying to use all the available technical aids and tools in order to have the best and most productive life.

and when I was asked to participate in a committee to improve patient managment, I told the head of the committee that he has to understand that I have a companion with me, require intermitent respriatory support, can't use a regular computer and mouse etc. so he said-then you don't want to participate in this committee. I said-on the contrary, I do, and that is why I am telling you all this, so that you will have realistic expactations and will be able to evaluate my work and not be distracted by those issues.

I think we really all have our abilities and dissabilties ( I mean even healthy people) and the question is how we find the way to make the most of our abilities, despite our dissabilities.

for instance, my young son was considered "hyperactive" and every teacher during the early school years thought we should give him Ritalin. I thought differently. I thought he was very active, and innovative, and that we have to find the way to help him use all this energy in a productive way, and not distrubing his teachers in class. and I refused to give him medications that have their potential side effects and long term damage, because his teachers had a hard time with him. I was fortunate that his pedicatrician was my partner in this.

well, now that he is 17, he grew up to be an amazing young man. he plays the cello, and wins prizes. he is a leader, he dances salsa, and everyone that meets him, tells me how much he is impressed by him. and although he does have some features of "hyperactivity" and needs my help everynow and then in organizing his extremely busy schedule, he is aware of it, and we discuss it together, and think of ways to overcome his shortcomings, and usually find proper solutions. also, I believe that understanding that he is not "perfect" makes him a more sensetive and understanding person, towards the dissabilities of other people (including his mom's).

alice

Nicky,

you are perfectly right. it is not longer thought that autoimmune disease are the result of an "hyperactive" immune system. in fact HIV has taught us quite a lot with regards to that. because it came as a great surprise that people that clearly have immune deficiency, also have a much higher prevalence of autoimmune disease.

in fact the more accurate way to see it is as dysregulation of the immune system. the immune system can be seen as an "army" which is fully equipped to attack any possible "invader". because of that it has to be kept under very tight control. we are very far from fully elucidating the very complex mechanisms invovled, but at least we know that we don't know.

there are basically multiple sub-populations of lymphocytes that are responsible for that, and we are constantly discovering more. in the past it was thought that there are T helper cells (CD4+, which are the ones that are low in HIV) and T supressor cells (CD8+) we now know that it is much more complex then that. and some of the T helpers are actually T regulators, and only appear to belong to the same population when in fact they have very different roles.

there are many new treatment approaches that try to modulate the immune system better. "tackling" what is wrong and not just "shooting" blindly at all the immune cells and other innocent bystanders. the first among which was rituximab which is a targeted therapy aimed at destroying only those cells that produce antibodies (B cells). the problem is that is not extremely efficient and also that it does not differetiate between normal B cells (which produce antibodies against pathogens that can attack us) and the abnormal ones (that produce the autoantibodies).

and in fact there is a lot of interest in trying to find various "natural" products such as green tea, curcumin etc, that are known to have an effect on the immune system, and utilize them as less toxic agents.

and I can tell you that herbalists can be just as arrogant as physicians, and some refuse to give away their "secrets" and join forces in this type of research.

alice

Nicky,
Thanks for the info. I stocked up on yogurt a few days ago just to be safe. Let me know what your Neuro says about the preventative antibiotic. The Pulmo put me on it because she was affraid with my lung issues if I caught the flu I would have a hard time fighting it off. I know you also have lung and breathing issues and just wondered if it was standard protocol. The pred has kicked in but the antibiotic is making me feel bad. I really wish I didn't need it so I could enjoy the effects of the pred!!!
Kendra

WOW what a great thread. I love how we can all have different opinions, and be able to discuss them with each other, without any problems...That's just wonderful!

I really do cherish each moment, and appreciate the days when all seems to go well.
Oh, and I do love those pull off tabs on tin cans now. Those have really helped me. And are the little blessings for which, I'm so grateful.

I believe in trying to see the good, verses the bad, but with in limits. Reality is, I'm sick, really sick, I have limited options on just about every angle of living life, but I still have options.
I'm a firm believer in knowing what the reality is in my situation, and then go from there in all my decisions.

Life is never easy, for anyone. I've learned, there will always be someone worse off than me, same as me, better than me...etc.. Knowing this, makes me grateful I'm not worse, thankful, I'm not alone, and hope to know it can get better.
I love you all
Love Lizzie

Hey Kendra,

I called my neuro. yesterday, and the intern said that I don't need preventative antibiotics. I think that as far as they know, my lungs are okay. Whenever the doc. checks them, they say that they sound very clear. The wheezing that i have is mainly when I lay down...I haven't really told them about that...

Take care!

Hi Nicky,
I'm glad you checked. That is good news that they don't think you need them. I wish I didn't have to take them right now. Grrr!
TTYL,
Kendra

Lizzie, I KNOW how sick you are --- and it constantly amazes me that you remain so upbeat. I love your enthusiasm and your optimism -- and I like to think that when I am "around" you, I soak up some of your "goodness"!!

I am ALSO amazed that this group so agreeably disagrees. I'm actually a little in shock about it. I sort of cringe a little right before I scroll down -- expecting to read some harsh words, but they never come. YIPPEE!! I LOVE this wholesome support of sometimes opposing ideas to similar problems!!

I also really appreciate how all of you look out for each other -- and check on each other -- just as a loving family should.

This is a good place to "be".