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.

Spending an Afternoon with Our Great Grandfather, A Truly Historical Event

Back in November, I blogged about planning for company.  My cousin was coming to visit and I was so excited that I planned a gourmet lunch for the two of us.  I think it is safe to say that my cousin's visit was a truly historical event.  In our lunch conversation, she brought up the blog where I had written about some of our ancestors and she expressed interest in seeing the sources of my information. I have a special section in our basement storage area for historical data and had pictures and documents filed in a box and soon it was on my kitchen table with us pouring over it.

My Great Grandfather, Fred Kiechel.

My cousin and I had a great time rummaging through my father's collection of pictures of our ancestors, various assorted documents, newspaper articles, letters, and even my grandmother's autograph book, but what grabbed our attention most that afternoon was a copy of a newspaper article about our great grandparent's fiftieth wedding anniversary celebration! It was a very long and detailed article published in the Nemaha County newspaper in 1929. Reading it together, and piecing the other bits of information we gathered about our great grandparents, we truly felt like we got to better know them, but especially our great grandfather, Fred Kiechel.

We initially giggled at the apparent irony of the article, for although he was described as too humble and modest to address all that had come to help celebrate this glorious event, he wrote a special piece that he had his son, Walter, read to all the gathered guests. He spared no detail in expressing his pride in he and his wife's accomplishments during their fifty years of marriage.

Certificate of Marriage for Frederick Kiechel and Alvina Donze Feb 2, 1879.

Picture from the Nemaha Country Herald February 8,1929. Married 1879. 

Fred was quite clear that he and his wife and children had played a significant role in being one of the founding families of their community!  With language, that in today's standard would be described as no less than theatrical, he told of he and his wife's raising of their children by their example instead of words and wrote of his principles which guided his life in terms that were anything but modest or humble. I was later to learn that Fred was a gifted linguist, speaking fluent German, French and English.

This article went on to tell about who sang and performed for this event, as well as descriptions of the decorations and what was served. It even listed all of the guests that attended. It must have been quite a splendid time for the family and friends of this rural Nebraskan couple and its report was anything but dull reading!

According to Fred, he had waited for this glorious event to express his deepest feelings. While his French/German culture was known for keeping such thoughts "close to the chest",  I had to doubt whether Fred ever kept much to himself. It was evident from my father's collections of Fred's writings, that he enjoyed good stories and enjoyed telling them as well! I could only imagine that he didn't miss any noteworthy or historical event and was diligent about recording his thoughts and memories for posterity as well as for sharing in their local paper. My father had copies of several of his columns, "Reminiscences of Pioneer Days". It seemed he was no amateur writer!

Vina and Fred Kiechel

Emigrant from France and early pioneer in Nebraska, Fred Kiechel (left)

A great old tintype picture of Fred Kiechel (left).

In one article he told about the local "lynching" of a citizen of their town. He used the word lynching rather than execution though his article described a person that was legally tried and convicted and according to Fred, deserving of the death penalty, which in those days was done by hanging. There was another article about how he, his mother and siblings, along with his maternal grandparents immigrated to America from Alsace Lorraine. His mother was newly widowed with small children and later remarried. It seems that this is how Fred went from being born a Sturm to becoming a Kiechel, having been adopted by his step-father.

My great grandfather's citizenship papers  dated 9/29/1896

I liked Fred, and as my cousin and I read on, and pieced the various details of his life together, the more real he became. Days later I was still thinking of him. Perhaps Fred's life wasn't much different than my own?  Taking notes of the events around him, I think he realized he was living the history of future generations. Fred might have led a simple life but his attention to detail in his future stories demonstrated that he was living his life in large ways!

Likely Vina (Emma Alvina) Donze and her brother, Charles.

When I was young, I had heard my mother tell the story that when Fred was playing with his first- born son, the child's head accidentally bumped on a piece of furniture close by, leaving him injured and as a result, he died at age four. My grandmother was born the year that he died and she was named Addie Rose, having the same initials as her deceased older brother, Albert Robert. My cousin's knowledge and mine seemed to mesh, much like working a jig-saw puzzle that all starts to fit together.

Fred's heart, no doubt grew in love through tragedy and grief, as well as hard work, good fortune and blessings. His pride in his accomplishments as well as his reported humbleness made more sense to me as I better understood this duality in his life. Like many, Fred's life had both joy and sadness. He took himself seriously and wrote stern words in my grandmother's autograph book when she was but a young girl, telling her that she "needed to take great care to never shame the family", though, if I have the story straight, he likely lived with regret about the accident with his first son. His life continued just as each of ours does, no matter how sad we might be about something that we have done, or not done. He lived with this loss for the rest of his long life and no doubt it changed him in many ways, just as significant events change us.

The facts written in great detail by himself and others indicated that he worked hard to be all he could be for his family and his community and was "a very God-fearing man" and raised his children accordingly. His emotional words bespoke of the sincere and earnest way he approached his life, including his challenges. This anniversary article bespoke of the best of his life and what he and his wife had accomplished. I gave much thought to how they both moved on with their lives, despite the loss of their son. He did write of his love of his wife and his family and he indeed had much to be proud about.  My grandmother and her three brothers, were all raised to be "upstanding pillars of their communities".

Fred and Vina 1910.

I say, "Good for Fred!"...he really is a mixture of what is most human as well as what is most noble and good.  He lived well and clearly this article along with his writings gave his descendants a lovely summary of he and his wife's life. His story demonstrates much strength, making peace and accepting what they couldn't change, and living their lives to the best of their abilities.

This old tin type picture adds credence to Fred's stories of early pioneer days.

My cousin and I laughed and enjoyed our great grandfather's colorful writings that revealed all that was so likable about him. We had a wonderful afternoon getting to know him.

"Thank you Fred! We enjoyed spending the afternoon with you and what is more important, is you left us memories of your life that made us reflect on our own lives and appreciate our common humanity. You also made us aware of how important it is that we record bits about our own lives so that one day our future ancestors can know us better and smile, knowing that they didn't fall far from the tree!"

I thank my cousin whose perspective and depth always "adds" insights into my learning. I will in the future post some of Fred's writings so my readers may smile and laugh as we did. His use of language is anything but boring, no matter who he is related to!

Following this fun day, my family decided to surprise me with a six month subscription to ancestry.com for Christmas. It is the complete membership that includes world-wide searches as well those in the United States, so there is more fun to come, and "Yes,Veronica, I am finding all sorts of new information out about my family and chuckling with my husband comparing each side."  It takes all kinds and guaranteed our ancestral tree seems to have a full variety of fruits*!!

(Note that for any of my relatives or those scrutinizing the accuracy of my ancestors lives, please feel free to correct any misinformation. It is my wish that my writings regarding my ancestors be factual versus fiction, though I do openly share my loving speculations about Fred's life based on the records we have.)

(* If you haven't already, please read the story about attending a friend's mother's funeral and the priest referring to my friend as one of her mother's fruits." We still laugh about her being a fruit, but aren't we all?!! You can't deny it...I have it on good authority that many of you confessed to being a fruit when you entered my "fruit pincushion contest" in May of 2014!) See http://littlehousehomearts.blogspot.com/2014/05/my-free-fruit-pincushion-give-away-this.html.

New Year's Resolutions: These Boots were Made for Walking...

For many years, we have been very careful at Little House to be sure to add our needs to our Christmas want-lists. We frequently are on a tight enough budget that we don't always have monies for both needs and wants.  With this in mind, we have all learned to shop very hard and also plan ahead. I am ready this year, not just to make New Year's Resolutions, but actually have all that I need to achieve them.

I discovered ebay and have learned I can find what I am wanting at great discount prices. My latest discovery is finding high quality "next-to-new" or " new seconds" name brand shoes for but a fraction it would cost to buy them if at full price. I have also found this to be true for bed linens as well as sewing notions, but I will share that in other blogs.

I am realizing that I have bought all sorts of things that haven't suited my needs and am learning to profit from others that are recycling such items and will follow suit to market mine on ebay in the near future. "One man's junk is another man's treasure!"

By trying on name brand shoes at the store, I found what brands work for my feet, the right size and style and then I go home and find them on line at prices I can better afford. There is even an enlarging lens on ebay that you can use to carefully inspect pictures to find items with little signs of wear that are "like new". Some may feel this is less sanitary, but how often do we try on shoes at stores that someone else has tried on and I am finding that these next-to-new shoes aren't much different, as there are hardly any scuffs on their soles.

Need some good shoes or boots, try ebay!

These boots and shoes were examples of such buys that were so significantly reduced that instead of one pair, I have purchased three, though only pictured are the two that I will use for my new walking and hiking needs. This year instead of simply making New Year's Resolutions, I have prepared to make them happen.

My "new" playroom/guestroom, great for exercising!

I have been on the Marshall Protocol for the past 7+ years to treat Chronic Lyme Disease.  It is a program that increases inflammation in order to fight infections that aren't killed off with lesser sorts of treatments. I eagerly planned for when it would be discontinued and I could return to exercising, albeit slowly. New dumb bells, an exercise ball, a hand-me-down recumbent bike and a cushy rug moved to our newly emptied extra playroom/guestroom and my workout room is ready to go complete with TV.  I even signed up for some physical therapy this last year so as to be prepared for a more active exercise program. Home exercises with resistant bands continue to be part of my daily program at this time. I even made a check list to help me remember them all, so as to maintain as well as continue to strengthen my body. I will have no excuses for NOT taking the time to make my New Year's Resolution to "get healthier" happen in 2016! Sometimes our plans aren't always so straight forward, especially when it comes to chronic illnesses, so if you aren't to this point, don't despair, but rather plan ahead for when you can tackle whatever it is you want to achieve. Sometimes that is the best we can do!

To establish new habits: exercise band, dumb bells, and exercise chart, 

My "new" hand-me-down recliner chair to watch TV!

I would likely never be comfortable without a TV to entertain me!!

For those of you that don't have physical challenges, all this planning and preparation may not be so necessary. I am looking forward to being able to do more, having weaned myself off the Marshall Protocol for the past several months. It has been a treatment that I hope helped to decrease what was thought to be an active ongoing chronic infection. But cured or not, I am now looking forward to working toward my ultimate goals of getting back to lap swimming and walking safely inside and out, on level and un-level ground, though I am real that it will only happen gradually and with effort. Being able to move well is not something I take for granted and how necessary it is to keep moving to gain or at least maintain strength!

"These boots were made for walking....and that's just what I'm gonna  do...one of these days, I pray that these boots are going to walk all over" to wherever I want to go!! Of course 2016 will also bring sewing, writing and reading therapies as well!  Happy New Year to you all!! May your New Year's dreams come true in 2016!!

"One of these days, these boots are gonna walk all over to where I want to go!"