Friday, February 3, 2017

About Chronic Lyme Disease...I think I will think again...

It is a fresh new day today following what has added up to be decades of Chronic Lyme treatment. I just completed my "doctor runs", having met with a Naturopathic Lyme doctor.  I had spent more than a week preparing what records I have and paper-clipping together notes and lab work from various doctors starting with the most recent and going backwards.

You know you're old when you have fifty years of significant medical history, numbers and bizarre diagnoses! If it wasn't my "reality", I might have hit a record for being one of the best hypochondriacs ever, and I am still wondering if I am not just one of those sort of strange psycho-sorts of people? I was so nerved up about this appointment, that I was able to orally give her my history in about an hour and a half, NOT looking at any notes. I believe it was my life's a one man play, complete with a reliving of all the drama that went with it, no doubt a sleeper for most...but rather anguishing for me and it filled almost the entire appointment. What blew me away was that instead of cutting me off, my new Chronic Lyme provider questioned me further and was busy pulling out data from my paper piles to document that it was all true! I was completely "rung out" from the experience, but must say that it was an entirely spontaneous and unrehearsed performance! I thought I had memory issues but amazed even myself!

Her ears had to be hurting and I realized in reading some of my own doctor records that I am not viewed as the brave woman I consider myself to be!  I think I expected a Golden Globe award at the end and proudly congratulated myself for my display of medical detail and memory.

My story even had twists of humor, mostly about being upset about not having pajama day holidays anymore, and getting gift cards for Christmas that I spent on what I most treasure in my life: books of all sorts, more patterns and materials and a new wardrobe of fun pajamas? I am sure that she wrote down that I have a clear investment in being ill?! I then found myself literally hobbling out totally spent and unable to process what had just happened. Had I just signed up for writing another chapter in my medical drama? I now have an appointment to meet with the nutritionist at their clinic, along with the previously scheduled PT appointment at our local hospital to work on yet another non-functioning joint...but think I will reconsider the rest.

Suddenly, how futile all lyme treatment seems to be? "A Lyme-literate provider" stands before me and instead of being impressed, my husband and I had to stop and ask ourselves whether or not I really wanted to sign up for another "snake oil"-sort-of-protocol and to what end? We know for certain that I have an inflammatory illness such that it continues to over-react in ways that continue to amaze doctors, but it seems that there is little to offer me that is any different than what I have been through before?

It didn't seem like my detailed spiel changed anything in my provider's mind. I might have taken five minutes instead and likely I would be prescribed the same course of treatment, and while their herbal preparations might be of some help, I was questioning as never before as to whether their real design is simply to help us rid ourselves of our retirement investments, so pricey all their little bottles of various potions that will need to be taken, several at a time, day after day, month after month and year after year, with no end in sight! I suddenly pictured them all being home brewed in someone's soup pots? I think my "Lyme cure seeking" is at an end?  

I remember my friend congratulating me on getting back to "mainstream medicine" and I had to scratch my head as to what I was doing in an alternative care provider's office and then had to remind myself that this is the only sort of place that now treats "chronic Lyme Disease". I didn't even get a legitimate blood pressure taken on my arm, but rather a little wrist band, and it was off the charts. My husband later reported that his eye specialist had used a similar device on him and his BP of 54/32 assured me that my BP of 177/100 was likely equally as unreliable, though I admitted to feeling like I was going to have yet another stroke!? I am always annoyed when nurses don't know that different sized arms get different sized cuffs or bands to take an accurate using the same cuff on everyone's wrist is likely bogus as well, though admittedly my wrist is less fat than the rest of my arm!!

I wondered where all this cynicism comes from? I think it started a few months ago, when I managed to raise my Vitamin D and then lost all my gains when my stored iron level needed to be corrected by "a blood donation", though no one wants my blood with too much iron! I suddenly found myself depressed. Lack of Vitamin D does that! I can hardly stand myself and pity my my poor husband having to live with my funk! Clearly I am not getting enough quilting therapy!? or sunshine?

I am questioning the seven year alternative therapy that I am still recovering from and now there is talk of more treatment to come? The only test for chronic lyme after initial testing is done, runs $750 and I take it that it isn't even that reliable? An offer of a new course of treatment is the easiest test and if you "herx", you still have lyme?

I had just inquired about whether or not a "herxheimer"/ "herx" reaction is just a fancy word for "experiencing a chemical sensitivity/ allergy/ or side effect"? My provider shook her head as when it comes to my last treatment protocol that might well have been the case?  But no matter as there is another protocol all ready to take its place, with still more possible herxing, as when treatment kills off lyme bacteria, it supposedly creates a toxic response. It is subjective at best, and I want real science now, and not be a guinea pig any longer!

I felt like I improved dramatically with the last protocol, but have spent years of my life being sick from such treatments?  My mind was spinning trying to understand all that was happening. Thousands of dollars are spent by people like me that want to feel better and I couldn't help but question as to when "living and dying" are to be the natural course of events? I have been so busy trying to survive that questions pertaining to "quality of life" aren't discussed. Perhaps it was time to just "move on"?

No, I am not slitting my wrists...just starting over, or should I say continuing on being "my own doctor" and will pick out of everything that has been recommended, what might make me healthier and leave the rest behind! To assume I am ill without really any measure of wellness or sickness but only my presence there and willingness to pay out my husband's life savings and send him back to the grind-stone for his retirement years must mean that I want an expensive treatment for an illness for which there is no cure? Being my own doctor, nurse and advocate, I have now just reached my own diagnosis...I AM CRAZY for sure!!

One of the best and most comforting of doctors is my hematologist/cancer doctor who sends me into the world to eat and enjoy life and he will then take the excessive stored-up iron out of my blood, by simply removing some of it. He tells me that within a couple of days, my bones will recreate my blood minus the extra iron.  It is treatment, but not a cure for storing too much iron, and he smiles and tells me, "My condition is easy to fix!" I don't even have to see him, just drop by the lab to have my blood checked as he orders. He will call me back if I need to come in, have a bag drawn to throw away and there is NO Herxing! I actually feel better! Who wouldn't feel better with a little less iron bogging them down?!

I do tease him that he isn't just taking the bad stuff but also the good as well, as my Vitamin D disappears. "Take Vitamin D supplements!" he says. "It is another easy fix!" He believes in making people feel good, unlike lyme doctors whose treatment makes you feel sick...and to think I went through twelve years of it, to only sign up for more?? "Think again!" will be my response...

I think it is time to sign up for a ballet class, and instead of waltzing through life like one of my friends, I think I will hang onto the bar as I do some glissades and end with an eleve and grande jete! I will of course put on my toe shoes to do this along with my ankle splints first!

Now back to bed for a while to continue recovering from all these big revelations. I called a friend of mine who has particularly strong faith and told her that I was following her example of believing that God answers all prayers...and it is time to believe that they have been answered and simply claim them!...Why not proceed with my life with this positive attitude?

When doctors dismiss the benefits of a previous treatment, but then again, here I am visiting her, perhaps expecting a special potion or several? Treating what seems to be a non-curable illness doesn't make sense to me unless I have discomfort that I can't tolerate, in which case I will seek palliative care.  I will seek such a specialist only to see if they have found a way to test for what ails me and meanwhile wait for research to confirm that something works on the bugs that reside in me, while I live out the rest of my days to the fullest!....

This is indeed a full 360 degree turn around to my way of thinking re chronic lyme disease. Supposedly if you manifest symptoms you have an active infection that needs treatment and yet there is no respect for what treatment has already been done. With no test or proof, they are convinced that I have more lyme bugs to be killed. Did I really receive years of treatment only for the purpose of recycling such treatments that bring me down and make me feel sicker? I see now that believing in Lyme-literate doctors is simply a way of making a big financial investment in the hope in this treatment or another, but when they are quick to tell me that there is always more to treat, especially at big bucks, I do have to wonder about their "gig".

There is a sucker around every corner perhaps, but I have been there and done that, and now I am with the CDC...Are Lyme-literate doctors there to simply take my money and give me potions to treat what is not treatable? I think my investments in quilting materials might be equally as healing if not more so, and in the end I will have something to show for it?

I am doing well-enough. I can quilt and while I would like to swim and do more physically, perhaps I will content myself with what I can still do and stretch to do more as I can. I have hope, hope in God and the strength he has given me to cope with such an illness. Living as happily as I can and counting myself lucky to have the time that I have had. Indeed, some aren't so lucky!!

I do pray that someday there will be research into this baffling illness. Why does the medical community give up without trying? They don't do that for cancer patients,  but honest feedback is what I now want...Don't give me false hope and make my family suffer more by spending their life savings and energy. I won't give up, but beyond good nutrition and exercise as my body permits and taking as good of  care of myself as I can,  I think it is time to accept what does and doesn't exist within the realm of medical care and live out my days!

I remain grateful to my family for their on-going support.  I will continue purchasing the latest books on chronic lyme treatment and remain open to medical advancements in the future, but for now paying out of pocket exorbitant prices for  potions that to date have little potential for cure seems at best a waste.

I have two children with  congenital chronic lyme and this means that I will never give up hoping and praying for research and a cure for this illness. I also know that it is at epidemic proportions in our society. I am convinced by some of my readings that it has likely become some sort of "retrovirus" that has been allowed to mutate within the research labs of our great medical system and only hope that one day, they will choose to be critical of their research, correct their mistakes and instead of sweeping them under the rug and ignoring the damage, they will indeed get serious about treating this deadly illness. None of us should have to live out such an illness without at least palliative care and medical insurance to support it.

Perhaps I will alter my decision some day to try yet another treatment for chronic lyme, though for now, I think I will at least give my Vitamin D level time to recover first and then go from there. Years ago my doctor spoke at a Lyme conference and stated that sometimes it is best to actively treat and other times, it is time to pause and build your body up? I think it is my time to take a break and see how I do.  I can always choose to gather bottles of expensive potions and become a real hypochondriac later, but hope to live a little first!