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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, August 9, 2013

Friday Tidbits: IV Nutritionals and Chelation

The good old James River, full of so many toxic heavy metals.

Do you remember when you were a kid and your parents told you that if you couldn't find something good to say about someone or something, you were to keep your mouth shut? (Hopefully, the parents said it nicer than that, but you know what I mean - or so I hope!) 

It was really good advice, especially when we don't have all the facts and are so tempted, at times, to say something just to say it. (Come on, admit that we're not all perfect angels all the time, no matter how much we try!)  Remember, too, when the media made fun of ME/CFS by calling it the "Yuppie Flu"?  Remember when comedian Al Franken spoke of CFIDS/ME/CFS in a demeaning and derogatory way?  Well, that was back in the 1980s and things haven't changed much, unfortunately.

Recently there's been a bit of hoopla about celebrities getting intravenous vitamin treatments as if they were doing so as a fad or for some trivial purpose.  But how quickly people are to judge!  The benefits of IV vitamin therapy have been known for decades and shouldn't be discussed in a negative manner by reporters who simply want ratings at the expense of people's health and lives.

Here are a few facts that should be considered:

  • There are many patients whose illnesses have resulted in their using up their body vitamin stores, leaving them with a vitamin deficit or deficiency.
  • Many people do not get adequate nutrition from the foods they eat and, when confronted with an acute injury or illness, need IV vitamins to help them heal.  A popular example of this is when the Emergency Room doctor orders a "banana bag" to be hung as part of the IV treatment for an ER patient. The multi-vitamins infused make the IV bag turn yellow. If you don't believe me, watch some old episodes of the TV show ER.  
  • As we age we tend to absorb less and less of the nutrients in the food we eat. This, in addition to the fact that many of our foods are not as nutritious as they used to be, may lead to someone becoming vitamin deficient. 
  • Ever heard of "leaky gut syndrome"?  (Of course you have!)  Perhaps we who have CFIDS/fibro are especially prone to becoming vitamin deficient and thus need to get our vitamins directly into the blood stream with an IV, as opposed to the good old fashioned way, by eating nutritious meals.
  • What is wrong with getting vitamins intravenously anyway?  The down side is minimal and the upside is enormous.  

I've written before that at one point in my life - back in 1997-98 - I went to a holistic clinic run by a doctor who'd been treating fibro and CFIDS for 50 years, referred to as "Adrenal Exhaustion" back in the day before we became plagued with the ever-so-popular name of "Chronic Fatigue Syndrome" - that's a bit of sarcasm, incidentally, the part about the popular name! (Clarified for novices to this blog!) 

I arrived at the clinic almost at death's door. (How I came about going to this clinic - quite by extraordinary circumstances - is described here.)  It was perhaps the worst period in my life, a life in which I was spiraling downward at an alarming rate, with new, major "things" going awry almost weekly.  Something had to be done if I were to continue living. 

After a few weeks of numerous therapies such rolfing, acupuncture, acupressure, applied kinesiology and other therapies which escape me at the moment, IV nutritionals were introduced once a week and then chelation therapy was later added.  These treatments really made me feel better than I had in 20 years, quite the achievement.  Even my sleep, my severe insomnia, was helped to a great extent.  My local GP was so impressed with my progress that he infamously said, "I don't care if they tell you to wear cow manure on your head.  It's working, so keep it up!"  Quite the statement!  

From one of the best therapists at the clinic, I was told many months into it all that "I never see someone so dead still alive," discussed here in "Perils of Exercise."  He'd spent years in a North Vietnamese POW camp, in a tiny cell where he could not extend his body all the way in order to sit nor lie down (described to me by his sister) so that really "impressed" me! The dude knew what he was talking about!  Now he knew death!

But getting back onto topic....

I must add that one can't go willynilly into the world of IV nutritionals - also known by some as a Myer's Cocktail. Or perhaps I should say it was a version of a Myer's cocktail - in my case - since it was tailored to what my particular deficiencies are/were and cutting back when I had reached the proper levels, not an easy thing to establish due to many factors, too much to go into at this point.

Vitamin levels were taken and revisited, relatively often.  Before chelation (nutritional IV with EDTA added to chelate out the heavy metals) I was tested to see if I did indeed also have heavy metal toxicity.  As an example, I was found to be off the charts in about 10 or more metals, including alumnium, arsenic, lead, mercury, antimony, bismuth, cobalt, copper, iron and so forth. 

I was found to be off the chart in all but one or two heavy metals, but especially completely, and insanely, off the chart in aluminum.  When my local GP saw the results he was shocked. He'd had a patient who had documented aluminum toxicity - from working in an aluminum plant. This man had around 4 stars on the chart. I had 30!  Yes, 30!  Hubs laughs and calls me the "walking toxic waste dump."  Funny chap that husband of mine!  Yes, he thinks he's so very amusing!  Please tell me, someone, why I married the fellow?  

And sorry, but another aside, though important.  As a child I used to visit my childhood BFF and we would swim and fish (and then eat the fish) from the James River, right next to Reynold's Aluminum plant, where we loved to watch the (VERY contaminated) waters coming out of huge drains (a la The Shawshank Redemption type), as seen in the above picture!

To give you a sort of example as to the necessity of having levels checked for vitamins and so forth, my rheumatologist/immunologist/pain specialist gave me a pretty good analogy: if you ask someone for directions to a particular location but the starting point isn't known, you are probably not going to get very far. The same is true for vitamins, supplements, hormones, etc. It's imperative that you know where you are starting from. That is, you should know your baseline level in order to know what dose (if any!) of any particular substance to take.  

It's also important to consult your physician about this!  In just the last few days I've come across two or three people who had bad reactions to magnesium.  But hey!  They didn't get tested to see if their levels were low. If you recall, I even wrote that you must get the RBC magnesium levels checked (here and here), not the way most doctors (who don't understand nutrition) test magnesium levels normally.

This may sound a bit harsh and perhaps too direct and maybe I could spend a bit of time trying to be a bit more diplomatic.  However, I'm feeling cruddy and just don't have too much diplomacy in me tonight.  But more importantly, I want people to understand that I'm not fooling around - and that seems to be achieved by being direct - since I've said often enough that levels should be checked.  As the cell phone company ad goes, "can you hear me now?" 

But getting back to the "making fun of IV vitamins."  People who don't understand how and why the intravenous delivery system of anything, including vitamins, works really should hold their tongues and try not to judge others.  Even if the celebrities are getting IV vitamins as a fad, it doesn't mean that IV vitamins don't have a place in the treatment of sick people.  

Some may say, "but it's so old fashioned to do nutritional IV's."  Well, that's like saying aspirin is old and so it doesn't work, or that putting a cast on a broken leg is old so let's do something else.  Worse, if one's IN PAIN and magnesium is shown to be low - as an example, mind you - you don't put that person on Cymbalta or narcotics. How crazy would that be?  The magnesium wouldn't suddenly get elevated with Cymbalta.  Your brain chemistry is being changed by meds like Cymbalta!  Mind you, pharma would like to convince you that the "pain meds" are better.  And the vitamin world at large is not exactly without faults either. They'd have you taking supplements, etc, out the wazoo and not mention testing levels.  I was shocked, dismayed and "devastated" when I discovered that the humdinger baby daddy of Kourtney Kardashian, Scott, is a spokesperson for GNC. Wow!  How did THAT become a good way to go? 

Finally, I'm not sure many doctors would argue that not establishing deficiencies is the right way to go.  

Those very individuals who insulted extremely ill people by trivializing their problems with the disparaging phrase, "Yuppie Flu," should have learned by their mistakes.  But that would have taken integrity and intelligence, two attributes sorely lacking in our ratings-based reporting.

As always, I hope everyone's doing their very best - only better!  Ciao and paka.

Note: the vitamin info here is pretty well-known and documented but I'll leave a couple of references just for the fun of it. Their bibliographies are a treasure trove of useful references. 

Gaby, A.R. Alternative Med Review (2002) Vol. 7: 389-403 link
Massey, P.B. Alternative Therapy Health Med (2007) Vol.13: 32-34. link

Yes, yes, I realize the references are not MLA handbook approved but then I'm no longer the person who used to do that sort of thing! 

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  1. As usual, very interesting, Irene!
    I am away to Greece islands and would talk to you in September! Mariula

    1. How lucky, Mariula. By the end of this year I think you may have covered most of the world. I wouldn't be surprised if you popped up in KL and ran into Nick!
      Safe and fun journey, дорогая! xx

    2. BTW: Mariula, this pic was taken at the Bakun's place when they still lived on that farm near Bermuda Hundred. :)