Saturday, January 23, 2016

Living With Chronic Lyme Disease: Progress? I Think So!!

It seems like since right after Christmas, I have been in slow motion.  I have spent the past few months withdrawing from the Marshall Protocol. I have to remind myself that this is quite an accomplishment!  Before you congratulate me, I must say that I didn't graduate,  but instead made a deliberate choice to discontinue it.  I didn't  reach the point predicted, when my inflammation was to dwindle to a minimum and the weight I had gained on it, simply melted off.  No such luck for me!

In fact I have the other sort of luck mostly. I was one of two people to ever experience a stroke while on it (November 2011), likely a side effect of all the inflammation that this protocol produced. After that I seemed to develop serious skin rashes as well. Fortunately my recovery from the stroke was nothing short of miraculous. The medication taken on this protocol has organ protective qualities that I experienced first hand, but my skin lesions have taken much longer to improve and did make me wonder whether or not this treatment was the right one for me. My rashes were severe enough that they prevented me from swimming or even wearing shoes comfortably, and being sedentary was taking its toll.

My inflammation still remains somewhat high and being completely off the medication now, it continues to diminish.  I stuck with this treatment for seven long years, but questioned if I had grown sensitive to the medication as I often do.  I am not here to negate that many have seen very positive results using this atypical treatment and I know that I experienced some myself, but it seemed time to come off of it.

My decision was resoundingly supported by my hematologist when he recently evaluated me for Hemachromatosis, a genetic disease where too much iron is stored in the blood and I was found to have an elevated ferritin level. If not corrected in time it will cause pancreas and liver damage, Perhaps I was lucky to have had Babesia, a co-infection that often accompanies Lyme Disease, and causes anemia as having less red blood cells can self-correct this problem. I had been evaluated for this genetic disorder many years ago, but was not advised that this is a condition that should be checked for annually as many times in women it doesn't show up until after menopause or later in life.

Nothing is straight forward about Chronic Lyme Disease and especially when mixed with other conditions.  Too much inflammation is a deliberate result of The Marshall Protocol, which eliminates Vitamin D.  Vitamin D acts like a steroid in our bodies and by eliminating it, my own heightened immune response was supposedly better able to attack the on-going Lyme infection, or so the theory of this new and innovative treatment claims. The jury is still out regarding the effectiveness of this protocol for me, but its high inflammation levels are likely responsible for increasing my blood ferritin level (stored iron).

Knowing now that I have one genetic marker for Hemachromatosis, means that I am more susceptible to acquiring it and this became the "coup de grace" moment. Coming off the "MP", I hope to lower my inflammation and with it my ferritin level as well, and lab work is demonstrating just that! It is down almost 17 points and I hope it will drop lower yet! Periodic phlebotomies or "blood-letting" is the treatment of choice for those with this genetic blood disorder and if my reductions aren't adequate, further treatment will make it happen. I joke about getting myself a jar of pet leeches  to do the trick (sic humor--but history has it that they were very useful in this regard!!)

Hemachromatosis can cause symptoms similar to Chronic Lyme Disease: fatigue, gut and joint discomfort, heart failure, diabetes and liver damage as well. The genes usually run in caucasion people of Northern European decent and if caught before damage ensues, it is simple to treat and control, unlike the ongoing effects of chronic Lyme infection. Fortunately my pancreas and liver have not been damaged to date.

I have been very real during the seven years on the MP.  I knew that upon its completion, I would then have other issues to be addressed.  Antibiotics, anti-malarias and anti-TB medications were used to treat my chronic lyme  and all have been hard on my digestive system, knocking down my natural bacterial flora. I knew this meant problems with my digestive system. Fatigue also increased my tendencies to gain weight as well. Probiotics and nutritional supplements may be warranted. Gaining weight around my mid-section has created what is called "metabolic syndrome" which is a precursor for diabetes. Exercise is needed to reduce weight as well as insulin resistance which is a major cause for type II diabetes.

My treatment addressed only my lyme but created other health issues that will now need to be addressed and incremental steps will be the only way to address these "larger" (pun intended) issues.The body is marvelously designed, but when one system doesn't function well, many other systems seem to break down as well.  It often takes a multi-system approach to address what might seem like a simple issue.

Complex health problems are not fixed overnight and timing is critical to everything. Weight gain was a side effect of my treatment, although I worked to limit my carbohydrates and follow dietary restrictions. High inflammation levels forced me to limit exercise so as to not exacerbate yet more inflammation. I am excited to be able to increase my activity level now, but remind myself that pacing is critical. I am hopeful  about regaining at least part of what has been lost but it will be a marathon, not a sprint to get there. Consistent effort, patience, and prayer will help me achieve greater wellness in the future (God-willing!). Is this progress?...I think so!!

I write articles about Living with Chronic Lyme to encourage others experiencing such "invisible" chronic diseases. Living with on-going health issues is not so simple and straight forward as it seems, but rather a life-long journey that means taking steps forward, despite suffering set backs along the way. Patience is critical,so as to not give up on working toward the long-term goal of better health! Meanwhile sewing, reading and other hobbies serve as fun diversions!! Pleasure produces endorphins, so important for healing and I have lots of it as I create pretty things!
New materials are the best diversion! Strips all ready to stitch a new quilt top.

Progress here too! The blocks are all sewn and...
...the light printed strips ready for sashings & remaining strips for the border.