"positive thinking" and healing-to Annie and others.
 

Dear Annie,

I read what you wrote about this and I think it is a very important topic.

we want to think that we have more control over what is happening to us, then we really do, and believe that our thought process can control the world around us or at least keep us healthy.

in a way this is good, because it does give us some sense of control, but the flip side of it, is exactly what you say- guilt when it fails to work.

I had a patient with acute leukemia, who had an amazingly positive approach. when she had rigors due to the blood products she recieved, she would smile and tell everyone that this is going to drive her illness away, she would come for follow up visits between her chemo. and hospitalization, dressed like she was going to work. when she had anemia that would make most people fall, she would look like the picture of health, with proper make-up. she only complained once, when an arrogant consultant did not believe what she told him, but other then that, she was always smiling, supporting others, and talking about her future plans, when she will recover from this illness.

she went on trips and lead a completely normal life, the moment she was discharged from the hospital.

when she died, I was devastated. it didn't make sense that such a person would eventually succumb to her illness.
I had quite a few patients, who had a much less positive approach and fully recovered from this illness.

through out my years of practice I have realized that a person's approach to life, is very important in their quality of life. it has very little to do with the severity of an illness, nor the recovery from it.

I have seen patients that die with a peaceful smile on their face, surrounded by their loved ones, and not losing their dignity until the very end.

and I have seen patients with a very minor disease making their lives and the lives of those around them very misserable for years.

and I think it is quite normal to have times when you are more positive in your approach and times when you are less, and although it may affect your mood and way you feel in general, I doubt that it has a significant effect on the course of your illness.

that being said, severe depression, that is not just a transient and reactive response to an illness, can lead to a worse outcome. and I have seen patients that did much better after this was correctly diagnosed and treated accordingly.

so the bottom line in my oppinion is that one's approach to life, is not the cause of an illness or lack of response to treatment, but can affect the way in which the illness influences your life. and how much you are ready to fight for your life, and its quality.

alice

Alice,

Positive thinking is a MUST as you as a patient know. There are times when I get mad and when I do, my nurse says. oh you are depressed, Why I wonder do nurses or Dr's insist one is depressed if they are angry for 10 minutes?

I was in complete drug free remission for 17 years and I do believe my positive thinking had a lot to do with it. So after 17 years of remission I became angry, not depressed when the MG started waving at me again.

Positive thinking I don't believe is denial or depression but "HOPE" as we all hope, thinking I will die from MG I feel will kill me. Everyone is different and I say hats off to those that put on their makeup or dress up for "work" I myself do this when I go out {when I can}, at least it makes me feel "normal"

Good post you put up :)

Or a person can believe in positive thinking so much that they die of severe dehydration after being in a "sweat lodge" for too long (re: James Arthur Ray, co-author of "The Secret").

I appreciate your post, Alice. I know that positive thinking is very important. Tenacity too for that matter. And friends and family to support you. And sometimes drugs. There are so many things that make our lives worth living and keep us happy - and healthy.

It's the "danger" of some forms of positive thinking I was referring to, such as believing you are responsible for your illness when you can't "think" it away. Or the danger of blindly following someone who believes in that philosophy, as Kirby Brown and James Shore did and died because of it (due to that sweat lodge of Mr. Ray's).

There is a fairly well-known man, who began his own business and succeeded, who has conducted the age old Indian (American) tradition of the sweat lodge. He, however, conducts it with Indians and in accordance with respect and ultimate concern for people's health and well-being. No one has ever died, or been harmed, when he has done these ceremonies. Many come away from it refreshed.

So any kind of approach to life or health, whether it's positive thinking or an old tradition, needs to keep focused on the needs of each individual.

I love hearing stories of people who overcome great odds to succeed, either with their health or their lives in general. Like the town of Greensburg, KS, who have rebuilt their town even better than before the tornado that destroyed most of it. And the woman you knew who had leukemia. It's sad when people die but we all do, sooner or later. It's what we do while we're here that is the important thing. And it sounds like she gave it her all.

It's when people take advantage of that "desire" we all have to live our best possible life, or warp those ideals into something dangerous and deadly, that I believe "positive thinking" stops being positive.

And, yes, if you approach someone or something with anger, you will probably get it coming back at you. If you approach someone or something with positive feelings (although I think anger, in and of itself, can be positive), then you will probably get that back. While I believe in the "essence" of that philosophy, I also believe that sometimes bad health just happens. Did all those people who died of H1N1 deserve to because they didn't wash their hands well enough or their immune systems weren't good enough to fend it off? See the danger?

Anyway, I appreciate all you have to say. I'm glad you are here giving us your input. And I really appreciate that you are such a thoughtful doctor, who really cares about what happens to your patients and others. Thanks.

Annie

Another FANTASTIC thread. (See, I still haven't SHUT UP -- LOL!)

My maternal great-grandfather was an alcoholic -- you probably know what this does to families -- to children -- especially WAY back then, before any support systems were in place. My grandmother and her MANY siblings were all pretty pitiful (one is still living). They moaned and groaned about each and every tiny little ache their entire lives. My grandmother SWORE that she was dying for the last 50 years of her LIFE!! She died of old age -- probably due to rotting teeth that she refused to brush or let BE brushed. Sad, sad, sad.....

Seeing this, I decided at a very early age that this was NOT the way I wanted to be. If I had only TEN MINUTES to live -- they could be 10 WONDERFUL minutes or 10 minutes full of woe and complaints. I "choose" to see the glass "half full".

I don't think that we can control our health -- we "might" be able to add a few months or years to our lives by our choices (food, jobs, lifestyle) -- but, we can certainly have a better QUALITY of life if we try to have the best attitude possible.

Listen, I have BEEN depressed -- and I am certainly NOT pointing fingers. I know that at times, you just can't do any better. I have been in the DEEP DARK HOLE -- trying to claw my way out with my fingernails!! But, I saw my grandmother refuse meds that MADE her feel better -- she WALLOWED in her sadness. I've seen "some" (not all) others do the same -- "enjoying" the attention that the pitiful circumstances bring. To me, it just is NOT worth it. NOT talking about my problem (MG) with outsiders is more "satisfying" than telling my "life story".

I popped a quick "thank you" button there before I left for the airport but now while I'm waiting for my plane I have some time to put down some thoughts here.

First, thank you Alice for putting these thoughts into word. While I do agree with you that a positive attitude is no where sufficient to treat illnesses; the quality of life that goes with having a positive attitude does help. My father went through non-hodgekins lymphoma, he went into work every day through his chemo. His employees used to joke that he was just too mean for cancer to beat. He's been in remission for several years now and is enjoying a great retirement with my mum. One of his former employees had lung cancer and gave up before giving treatment an honest chance, he didn't make it.

The big beef I have personally (and I was very happy to have my point of view reflected by Dr. Nicolle) is with the new age people who push positive attitude, diet and herbals will cure ya. I asked him about diet (foods to avoid, foods that I should be trying to eat more of)... There is no evidence that diet effects MG either way. Eat a healthy diet with lots of variety and all is good. I asked about vitamins... what you get from your food is all you need. No supplements are needed unless your diet is unbalanced. A single multivitamin per day will easily make up the difference. He was adamant that I avoid any herbals, especially those that "boost your immune system". I had always thought of it the same way and had to fight family from trying to force that stuff down my throat, but our problem (those with MG) is not a weak immune system but an over-active one. Why would we want to be boosting that when it is so active as to make us sick?

Anyway, I just wanted to say that I appreciate what you had to say regarding positive attitude being good for quality of life, but don't look to it to heal anything that is physically wrong with you. I also wanted to pass along some interesting perspective that I received from Dr. Nicolle regarding new-age thinking as a route to curing MG.

Cheers!

Brian

Jana, Thanks for sharing that. It is hard to grow up around negativity - if I can call it that. ;) I do know a bit of what that's like. I'm glad you took all that you experienced and turned it into a positive. Good for you.

Brian, I have to add this, having been around alternative medical professionals for a long time. And I mean "professionals" and not "new age" laymans. Like those at the University level and experts around the world.

It will help your overall health to get enough sleep, to keep stress out, to eat healthy, have sensible supplements, enjoy your life, laugh, etc. Without enough sleep, good food, etc. people do get sick. It isn't boosting your immune system to take care of yourself. And I think it's oversimplifying by saying that our immune systems are over-active. Immunity is pretty complex and I certainly don't have a grasp on it all. I do know enough though that it can run the spectrum from being underactive (like having no IgG), overactive, reactive and not active at all! ;)

I think it's important to realize that not all doctors know about or understand "alternative medicine." It's also important to define what "new age" is versus well-studied alternative medicine. Those doctors in countries like China and Japan have studied certain herbs, etc. for centuries. I do not for one minute believe that I know enough about any of it to either endorse or deny their effects on patients. I do know, however, that there have been many studies touting their very good effects. And I suspect that there are those in the U.S. that deny their benefits because they (i.e., the pharmaceutical co's) don't benefit from the sale of them.

And all the drugs we do take are derived from nature. Or synthesized from what we know of how plants help certain conditions. And as Lizzie has recently said, you should not have grapefruit while on Imuran because it can buildup in your system to toxic levels. A little, tasty grapefruit. That's also holds the same for some antibiotics. If a little fruit can adversely affect you, what else could OR what else could HELP you?

I personally don't think anyone should use supplements/herbs without consulting with their doctors. If you have a parathyroid condition, for example, and take too much calcium, you could have bad consequences. Same with someone who has a tendency to get kidney stones. On the other hand, I also know that using pancreatic enzymes - in this case for my dog who has pancreatitis - is a very sensible and useful thing to do for some people. For my dog, it keeps him alive (gives the pancreas "time off" from digesting foods).

You may not like what I'm going to say next. The medical world has enough arrogance in it. No, I'm not saying that's how you are!!! But for doctors who haven't thoroughly looked at this issue to say that there's nothing more you can do for yourself is quite narrow-minded. The body is extremely complex, as is the spirit as Jana alluded to, and I don't think we have even begun to understand what it needs to be healthy.

So, yeah, there are those out there who would tell you anything to sell you something. And there are those who maybe don't understand how alternative medicine can help and are desperate for answers. But there are also many medical professionals who are both willing to research this area and entertain that there are other solutions out there. I for one will always keep an open mind about this topic. There are solutions out there - we just haven't found all of them yet.

Meditation, for example, is often thought to be "new age" BS but it is very useful. In particular, it can help with PTSD, panic attacks, etc. It can help people with insomnia get to sleep. This is only one example of how many alternative therapies can give real and substantial help to people.

I had one more thought. If something isn't studied, how can we know it won't help? There aren't that many studies being done out there on the effects of certain therapies on MG or other autoimmune diseases. So, Brian, how can that doctor say that nothing will help? No one is an expert in this area because no one is pursuing being one - at least that I've read of. I wish someone would. And Huperzine A is just one example of an herb being studied for use in MG.

Or you can think of alternative medicine as a "cascade effect" on MG. I don't have stomach acid. If I didn't take Betaine HCL every day to digest my foods, I would have a buildup of undigested food in my body. That can lead to leaky gut. That can make the immune system worse or even bring on immune diseases. Without enough stomach acid, you can get more infections and I used to. If I kept having infections like I used to, my MG would eventually be adversely affected. Logic is more important to me than scientific studies sometimes. If something has been proven to help your health, why ignore it?

I'm sorry if this offends you or anyone else.

Annie

Mrs. D. has had this quote on her posts in the past and it is one of my favorites as well.

“All truths are easy to understand once they are discovered; the point is to discover them.”
Galileo Galilei

I tend to see people with autoimmune diseases as having 'weak' immune systems. They seem to be more prone to infection than those who have 'normal' immune systems.

As an example, I decided to look up 'thymus and HIV' just out of curiousity one day. There seemed to be quite a few cases of people with HIV developing Myasthenia gravis and Lupus-like syndromes. In fact, some doctors were proposing that Myasthenia gravis in HIV patients be considered a disorder that sometimes comes with seroconversion. I don't know if this is happening because of molecular mimickry, in which case, it might not be indicative of a 'weak' immune system, but something a bit different, or because the immune system is being destroyed somehow and making it act wacky, or even both. There was actually a study done comparing the thymuses of deceased HIV patients to those of people with MG who had thymectomies. Pathologically, the thymuses were very similar. To me, this translated to autoimmunity being a sign that the immune system is really weak, or injured in some way.

Sorry to have diverted the subject a bit! Just wanted to share that bit of info.. I found it really interesting!:o

Postive thinking and MG
 

My partner was diagnosed with MG 6 years ago he is also a recovering alcholic as am I (he has not drank in 15 years, me 10). Anyway he had a thymectomy that was benign and has had PET scans since and no cancer. Initially, after no response to typcial meds, he was receiving plasmaphersis monthly, followed by IVIG. He has been intubated 3-4x been on cyclosporine which made no mark and also on a trial rituxan stint which also made no mark. His neuro's respose. Do nothing, sit around and wait to die basically is how I take it. He needs surgury on his shoulder for reconsturction as he has fallen due to weakness in his muscles and his Neuro does not want him to have it.

Need to finish this later

Hey Janet,

I congratulate you guys on being alcohol-free for so many years-that's pretty awesome.

I'm sorry that your hubby isn't doing well, Janet. What type of MG does he have? Is it AcHR, Musk or seronegative? I know that you mentioned that he was intubated, but what other muscles are affected?

My heart really does go out to you!

When you say that his thymus was 'benign' do you mean that it was normal (as in not hyperplastic and not containing a thymoma), or that there was a tumour in it that was benign?

My MG has been pretty hard to treat as well...I had a thymoma that was removed in July...But high-dose (60 mgs) prednisone has helped somewhat along with mestinon time-span...But I still have quite a few days where I am very weak. Infections don't help, and the prednisone makes me prone to them, which tends to take me back in terms of symptoms.

I've never heard of Rituxan, but is it a chemotherapy drug, and if not, has he tried chemotherapy? I know that it can sometimes help with refractory MG, although it's harder to recover from when there's no thymus.

:hug:

Doesn't offend me in the least. I respectfully disagree. I appreciate the idea of Eastern medicine; however I believe that Western medicine is what is going to keep me well. I practice Tai chi for the relaxation and meditation, I don't have any problem with Eastern practices. However, when looking at Eastern medicine, it is insufficiently controlled to say what is actually helping. Herbal medication to "boost" your immune system is something I will happily avoid based on my understanding of what is happening in my body and on the advice of the top MG specialist in Canada. If you believe they help you, great for you. There is a lot to feeling better to improve your outlook on life.

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

"positive thinking" and healing-to Annie and others.
 

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

positive thinking and healing to annie and others
 

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

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!:)

positive thinking and healing to annie and others
 

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

Hi Lizzie,

I remember when I couldn't even manage those pull off lids on tin cans!!!!! Now I to adore them, a can opener can wreck my whole cooking plan!!! or just slow it down.

I agree, it's great when people agree to dissargee. :I-Agree:

we are all so different, come from different backgrounds, have had different experiences, that there is no way we will all think the same, just because we have a disease (which is also different for each of us), with the same name.

still, we can sometimes take something (even 10%) from what someone else says. and those small parts add up together to make our life better.

my dad used to tell me, when I was a kid, that when you eat a pomegranat you throw the peel and eat the inside. and this is the way you should approach life-"eat" the good parts, and throw away the peel.

and for each of us, it is totally different, but we can eventually find out what works best for us-what is the "inside" of the fruit and what is the peel, without being disrespectful to what works for others, which may be quite different. there is no "one size fits all" here. and I know that certain things that work for me, are a total disaster for someone else and vice versa.

hope this makes some sense.

alice

Love you, TOO, Lizzie!!!!:hug:

Alice, your analogy made PERFECT sense!! Are you SURE that you are a doctor (hehehehehehehe)????:D I especially agree with the part about taking maybe even 10% of what somebody else says/suggests -- and how that can make all the difference in the world in how we live -- SOOOOOOO TRUE!!!

You are also SOOOOO right in saying that what works for one might be a total disaster for somebody else. I have seen THIS first hand.

I think that I have some of this MG stuff figured out -- I "can" live with what I currently know about how to manage my particular case. But, I constantly and eagerly read what others have to say -- always thinking that another piece of the puzzle is out there -- that somewhere, somebody knows a way for me to get 5% more strength out of my day -- or 5 more words without slurring -- or 5 more minutes of walking without dragging a leg -- little things that would make all the difference in the world to ANY MGer.