Beginnings Are Hard

Time becomes incredibly confused when you suffer from Tick Borne Diseases. Especially when those infections affect your brain and your ability to properly process anything. As I begin this blog that I have been pondering in my head for a while, I can’t help but wonder where to start. How do you choose a first post for a blog focused on a story with no clear beginning, middle or end? I wasn’t sure I would ever tell this story.  Or if it would even be worth telling. This illness has proven me wrong. This story needs to be told. The ticks are not going anywhere. In fact, they are growing in numbers and growing in the pathogens they carry and transmit to humans. But the controversies surrounding these very real health concerns are swept under the rug.  Meanwhile, the danger the ticks pose continues to grow. If sharing my terrible story helps anyone else, then it will be worth it, and I now feel compelled to tell it. Even though there is still no clear beginning or end.

I think the best way to handle the immense amount of info I need to impart to start this blog off right is to just dig right into relatively current events. Even if I found the energy to type it all, nobody would stick around long enough to read the entire thing in one sitting anyway. So we’ll start with what’s happening now. Eventually, I’ll get around to sharing the rest.

I said there was no beginning. Because I don’t know when I got the tick bite that began my downward spiral. But I believe it started almost 5 years ago. And progressed until it got really bad in the last two. I saw over 18 different physicians over the course my illness. 7 or 8 months ago I finally went to see a Lyme Literate Medical Doctor (LLMD).  He began treating me for babesia (a nasty malaria-like parasite that eats your red blood cells) immediately with several months of oral antibiotics. In addition to babesia, I also have a host of other Tick Borne Diseases that have only just begun to be treated properly the last few weeks. I also have Anaplasmosis, Rocky Mountain Spotted Fever, Neurological Lyme Disease and Mycoplasma.  Before I saw the LLMD, my illness had been either ignored completely,  misdiagnosed or just inadequately treated by every physician I saw. I am not someone who had no positive blood tests and fell into that trap of poor unreliable testing. I had elevated levels for each and everyone of these illnesses with the exception of babesia for years. But I still got no help and was instead left to get sicker. In addition, my body is overloaded with antibodies to all sorts of viruses like Epstein Barr Virus, and I can’t absorb many important vitamins and nutrients no matter how we try and supplement them. The LLMD finally stopped the madness (much more on these issues in later posts) and finally began treatment. But the road to wellness is very long, bumpy, and full of twists and turns because the bugs were all allowed to roam free in my body for so long.

Before my LLMD, In addition to the myriad of painful and debilitating symptoms I suffer with these illnesses (which would take too much space to include here.) I had more blood tests than I can count. Over and over a Doctor would send me for more tests. An endless stream of needles and reports to analyze. The file is alarmingly huge and difficult to navigate. On all of these tests, there were always numbers out of range. But some of the most disturbing were my CBC blood counts. I assume that back when I was healthy and younger and having babies? Standard blood tests which would include a CBC test were surely done. I was told they were all normal and everything was fine. But I never asked to see them. Now I ask for copies of every single test because I’ve learned that’s what patients now have to do. But anyway, I assume that I once upon a time I had normal blood counts. But since 2011, when I first became ill, I have not had normal blood counts, not even once. My white cells and platelets are high, my blood cells are all oddly shaped and sized. There are always multiple things highlighted by the lab on these tests as out of range. I don’t even know what a normal lab looks like. Treating the hemolytic anemia caused by the babesia parasites attacking my red cells those first 6 months with my LLMD, with proper antimalarial medicines and also through a weekly series of IV iron infusions to improve my iron deficiency, improved some of these blood counts. My white cells have been back in normal range for almost 6 moths now. My iron level seems to be remaining stable though haven’t had an iron infusion in months. Yet, I am still as sick or maybe even sicker than I have ever been. And I still had a really big concern. While most of my blood counts had improved, my platelet level remained elevated. With zero improvement. I had begun to worry I might have a separate problem going on. Because the Tick Borne Diseases I suffer from usually cause low numbers in these areas, not high numbers like mine. For months my hematologist (who I will no longer see because of how badly he mishandled my case) billed my insurance company for a condition called Essential Thrombocythemia. This is more or less a slow moving blood cancer that causes someone to produce too many platelets. The Hematologist billed my insurance company more than 10 times for a blood cancer. Yet never once told me I had it or did further testing that should have been completed to see if I actually did. But I sure worried about it when the platelet count did not improve. Did I just have this awful nightmarish combo of all these tick borne diseases or did I have all those AND cancer?

Well, today, I finally have a very awesome, and timely, starting point for this first blog post. Guess what? For the first time in at least 4 1/2 years, if not longer, one of those annoying blood tests that always just shows problems nobody wants to fix? My tests came back with almost nothing out of range!!!! Even my platelets have finally stepped back into their proper place in the normal range where they belong. If you have never experienced a long term illness with such a long string of medical evidence medical professionals ignored you can’t possibly understand how amazing this is. Normal Platelets!!!!!! Again, I am not a medical professional. I am just a simple quiet country girl. But to me, this amazing news combined with recent changes to my treatment implies my LLMD and I are finally on the right track! It’s working! Finally, after all these years, something is working! Something is getting better! If I had the energy to dance a Jig I may actually have done so when my LLMD’s staff called to say all my counts for this week were in range. I hope I didn’t hurt her ear screaming, my shock was so huge after so much time with no improvements. I know I asked in disbelief if she was absolutely sure she was looking at MY lab report. She assured me I was. And happily congratulated me laughing. I don’t remember screaming, but I wouldn’t put it past me to have done so.

Yet Even then, I was skeptical. I told my partner about it as I knew he hadn’t missed my odd reaction to the phone call. We cautiously reminded each other we better wait to see the report for ourselves. Because it sounds too good to be true. We remained understandably skeptical until LabCorp finally posted the lab report a bit earlier today.  Because if my treatment was working that well, Why wasn’t I having much more measurable and lasting improvement in my massive list of symptoms? How could I still be so sick and almost unable to work even short shifts at work? Or even manage a shower daily? We just didn’t see how it could possibly be true. Then I was finally able to view the report myself. Unfortunately, I have technical difficulties sharing the lab report in a visually pleasing fashion. Forgive me. I’m working on it. But here is a badly copied copy of Monday’s CBC blood test. Which shows almost every single number in range. Something I have never seen in over 4 years if ever!  (There is still one small highlighted line. But we’ll worry about that little detail later.) For now, for all intents and purposes, my blood counts are normal! This could be the  sign that I am finally on my way to wellness. I believe my treatment has to be working.  Hopefully this is the beginning of the happy ending to this incredibly long journey. Certainly it’s a good way to start this blog. With the incredibly positive and hopeful news that I probably don’t have a blood cancer in addition to my myriad of Tick Borne illnesses. And that my current treatment plan finally has me on the way to wellness. I like starting with hope. It seems so much more appropriate for any story of mine.  An excellent beginning indeed!

Please pardon my ugly cutting and pasting.

CBC With Differential/Platelet

WBC                               8.9

x10E3/uL    3.4 – 10.8 01
  RBC                              4.47 x10E6/uL   3.77 – 5.28 01
  Hemoglobin                       13.1 g/dL   11.1 – 15.9 01
  Hematocrit                       41.4 %   34.0 – 46.6 01
  MCV                                93 fL     79 – 97 01
  MCH                              29.3 pg   26.6 – 33.0 01
  MCHC                             31.6 g/dL   31.5 – 35.7 01
  RDW                              14.4 %   12.3 – 15.4 01
  Platelets                         371 x10E3/uL    150 – 379 01
  Neutrophils                        55 % 01
  Lymphs                             32 % 01
  Monocytes                           6 % 01
  Eos                                 6 % 01
  Basos                               1 % 01
  Neutrophils (Absolute)            4.9 x10E3/uL    1.4 – 7.0 01
  Lymphs (Absolute)                 2.9 x10E3/uL    0.7 – 3.1 01
  Monocytes(Absolute)               0.5 x10E3/uL    0.1 – 0.9 01
  Eos (Absolute)                    0.5   High x10E3/uL    0.0 – 0.4 01
  Baso (Absolute)                   0.1 x10E3/uL    0.0 – 0.2 01
  Immature Granulocytes               0 % 01
  Immature Grans (Abs)              0.0 x10E3/uL    0.0 – 0.1 01

 

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