Living with MCL

As most of you [should] know, I’m not a fan of vitamins, supplements or anything supposedly designed to boost your immune system. I think they’re a scam (and I know about scams), but even if you could boost your immune system, why would you want to? An over active immune system can cause just as much harm as one that is malfunctioning. Even more simply put, an over active (boosted) immune system is a malfunctioning immune system.

Still just my saying so, hasn’t stopped [no matter how hard I try] the plethora of products on the market (with new ones coming every day), nor the people naive enough, IMO, to use them.

Here’s an example of a post, from a member of the NHL message board, I found today of particular note. It even includes a new remedy I hadn’t heard of before.

I have followed a mainly macrobiotic or raw food diet, always organic, for over 20 years.  I rarely had a mere sniffle during that time, so I do believe diet is protective of our health (but darn it–it apparently doesn’t prevent NHL).

What I find truly amazing here is, this person actually recognizes their “macrobiotic or raw food diet” didn’t prevent them from contracting NHL, but still believes it’s “protective of our health”. I wonder if they ever considered it was the “macrobiotic or raw food diet” which actually caused them to contract NHL?

I do however concur that diet does play an important role in our health. I just don’t believe you need to go to extremes. A well balanced diet of fruits, vegetables, and proteins is all anyone should ever need.

But there’s more,

….. last year, while I was receiving Rituxan, I began to take extra measures to protect myself from all those H1N1 and other flu bugs flying around.  Everyday I add essential oil (tea tree, anise seed, and soon to be oregano) to a pan of boiling water and breathe the vapor for 3-4 minutes.  This is suppose to help kills germ and fungus that have been living in the sinuses for God only knows how long.  When I fly, I load up on that AirBorne, and apply a little Bacitracin to the inside edges of my nostrils.  I hand sanitize like crazy.  These precautions have protected me “from the onslaught of inconsiderate coughers and sneezers on the plane” that don’t cover their mouths!

[And BTW] — I did get a flu shot last November, but I did not get the H1N1.

At least this person recognizes the necessity of cleaning their hands often, but Bacitracin? Bacitracin is an antibiotic used to treat or prevent a skin infection. It’s not going to protect you from getting sick. Besides why wouldn’t you use Neosporin which has two other antibiotics, and provides 3 times the [non] protection.

I won’t even comment on “the essential oil (tea tree, anise seed, and soon to be oregano)”. Oregano??? Give me a break, besides, it was the flu shot that likely did more to prevent getting the flu than any of those other remedies.

As far as Airborne or other supposed remedies protecting you “from the onslaught of inconsiderate coughers and sneezers on [a] plane,” I say hogwash. While obviously if someone coughs directly on you, that would be a problem (that would be a problem on the ground as well), in reality the air in a aircraft is recirculated every 2 to 3 minutes, and makes traveling on a plane a much healthier experience than sitting on a train, in a movie theater or even in your own home. If someone gets sick after flying, it wasn’t from the air on the aircraft.

And now here’s the kicker.

Re: the manuka honey, I take a heaping teaspoon first thing every morning before I eat anything.  It is the raw, organic 15+ from New Zealand.  Heating this honey destroys its antibiotic power, so you definitely want the raw honey.  However, I might be a little frightened to use it if my immunity was very low.  It’s kind of an “oxymoronish” situation– where raw indicates that something could harbor germs –  yet boiling away the supposed germs would void the antibiotic power of the honey!  Let the doctor decide this one, especially if you are currently on chemo.

Well, let me tell you this, if you have NHL, you have a reduced (compromised) immune system, so that’s one good reason for not taking it. And what the heck is Manuka honey anyways? I couldn’t find anything even on the internet touting it’s benefits. Maybe because it’s from New Zealand it must be good. And why would you be concerned with eating raw honey, and not a “macrobiotic or [organic] raw food diet”? Organic doesn’t mean germ free!

It continues to boggle my mind how some people can be so gullible. People only hear what they want to hear. The problem is too often what they hear and the truth are two different things. But I guess when you’re grasping at straws, the concepts of truth and logic go out the window.

Just my opinion!

It’s hard for me to be critical of the measures that some will take in seeking a cure for their disease, since I have my own alternative medicine regimens and beliefs, but sometimes a post comes across my computer that just seems so over the top, I have to say something.

Recently a member of the mantle cell lymphoma (MCL) e-mail group I subscribe to, posted the following to the group about an alternative treatment plan he is undertaking.

Presently my NMD [Doctor of Naturopathic Medicine] has me on a wide range of herbal drugs [all in pill form]: Recanostat (a liver cleanser), Red Clover (an immune builder), Seacure (dried white ocean fish in a capsule for weight gain), Gastinc (weight gain), Adrenal (swelling of throat) and Compound X out of Reno, NV. (immune builder) – [ap]parentally an old Indian formula of various type herbs & roots. Compound X is the main treatment now and is a nasty tasting paste that you put in gel cap just before taking. It will make you nauseated, and I have to eat some fruit shortly afterwards to keep it down. ….

Maybe what they say is true, “what doesn’t kill you only makes you stronger”. He goes on

Also she [the NMD] does a blood/ozone/oxygen treatment every two weeks where she draws out 250cc [of] blood, run[s] it through a light machine, add[s] oxygen and then puts it back in. This is suppose[d] to clear the blood of impurities. The blood has changed color from a near purple/black condition to a red condition – so it must be working. Also during this same treatment I will either have a hydrogen peroxide treatment (150 cc) – for breathing, and there is another intravenous treatment of 250 cc for the immune system..

The first part almost sounds like blood letting to me, and then intravenous injections of hydrogen peroxide, well if that doesn’t sound like quackery, I don’t know what would.

She [the NMD] is going to start me on intravenous vit[amin] [C] treatment this coming Tuesday. …..[S]he is concerned about the fatigue and is having some blood test[s] run. She also wants me to start shots directly into the lymph nodes in the right groin area. It is a drug made in Germany and I can get it through a Canad[ian] dist[ributer]. The shots are twenty-one days in a row with two days off and then start all over. I would have to do a min. of three series. This is suppose to drain your lymph system. My NMD believes in building a strong immune system and it then will fight the cancer. …

In my opinion, you either have to have tremendous faith in your doctor, or be extremely desperate to follow such a course of treatment. I doubt that I would ever have enough faith in any doctor to go to such extremes, and if I were that desperate, I’m not sure it would be worth it anywaze.

But the Naturopath did have one piece of redeeming advice, and that was concerning diet.

My part is following her diet. No sugar or products made from refined sugar, no sodas, no milk products whatsoever, no corn or corn products, and no pork products. This is a killer for me as I love my cheeses, Mexican food and sodas. Suppose to eat lots of green fresh leafy vegetables, fish, chicken and red meat, also beans, potatoes and eggs. Can only cook in olive oil. Also wants me eating a lot of fresh fruit, especially red fruit, lots of nuts – walnuts, unsalted peanuts, almonds and natural peanut butter or almond butter.

That is where I am happy to say I am in complete agreement with the Naturopath. A healthy diet lacking in refined sugars is the best way to fight off cancers. Not sure what is so bad about corn, or if there is any benefit in natural peanut or almond butter, but then I’m not a doctor or nutritionist. I just have strong opinions.

There was one last point that was made in the post which I do take particular exception to.

… My problem is I may have to find me a new onc[ologist] that is up to date and proactive. When I see my present onc[ologist] he will ask me if I am ready for chemo and then I ask him if there are any changes out. His answer is nope no changes, therefore my answer is always nope. Doing a lot of research on my own, I find there is a lot of changes, so don’t know where he is coming from. He calls alternative medicine voodoo. So you see what I am up against.

There I have to agree, with the oncologist that is. I think VooDoo medicine might just be a good term for what is being prescribed here. (NOTE: I’m not trying to disparage VooDoo here. While there are many who truly believe VooDoo is real, I do have my doubts, but I think it best if I cover my bases.)

The other accurate statement is, there have not been any significant advances in the past 30 years in the treatment of cancers, blood or otherwise. With the exception of the addition of some monoclonal antibodies, which have shown some encouraging results, the standard cancer treatment is the same as it was 30 years ago, that is to infuse deadly chemicals into the body in an attempt to destroy the cancer cells. Nothing has really changed, except maybe for the chemicals.

While there is current research into vaccines, it is still in its infancy, and there are no studies yet, indicating the efficacy of such vaccines. Advances have also been made in the area of stem cell transplants, but some might consider those extreme measures as well, considering the risks.

IMO, we would be a lot further along in changing the current state of medicine for treating cancer and all kinds of disease, if so many people in the US weren’t hung up on the use of embryonic stem cells for medical research. Their steadfast position against the use of embryonic stem cells for the advancement of medical science, while at the same time permitting the wanton destruction of these same stem cells, without considering the potential benefit to society in curing many diseases, is beyond my comprehension.

Umh! I wonder if that comment will spark any controversy?