I should have taken advantage of the rain this winter practicing rain drop photos, but Babesiosis is a bitch. Sometimes I think if it were only just Lyme disease and just Borrelia I had to manage, it would be a piece of cake. I've made tons of progress treating Lyme-MSIDS & CVID these past 3 years. My joint pain is gone, my immune system is improved, but not fully recovered. Yet Babesiosis, a red blood cell disease which came along with the Borrelia transmitted by a tick bite, just won't quit me. Being vertical is a challenge. My heart races and my blood pressure drops and everything goes black if I move too quickly, which is known as POTS (Postural Orthostatic Tachycardia Syndrome) or sometimes called Dysautonomia. This, coupled with difficulty breathing, muscle weakness, difficulty standing, ice pick headaches behind the eye brows, and light and sound sensitivity all hit me end of December. So I've been treating it, AGAIN, leaving my mind and body out of service. Meanwhile, I managed to screw up cleaning my camera sensor twice now, because my brain is about as bright as Alaska in December.
But here's a photo of a blooming magnolia on my still-dirty sensor. After a long, dry, hot summer left the leaves of my magnolia trees scorched, I thought I would lose all three newly planted trees. But now they are blooming. So I have that going for me, which is nice.
I'm running out of options to treat the recurring Babesia. Last year, Apheresis treatment was on the table but Mr. Wild Dingo was worried about having the surgical procedure for the port that is required for apheresis, after my PICC clotted in 2015, so we continued with medications instead of going down that road. But after 9 months, Babesia came back and not as responsive to the meds. So apheresis is back on the table. The surgery or port do not concern me. What does concern me is having an already compromised immune system (though improved over the last year with IVIG, it remains well-below normal), and risk picking up another infection from being hospitalized. The last thing I need is another infection. So here I am going with IV ozone, the second option, done weekly for a few months to see how it goes. People have said promising things about ozone and Lyme disease. Here is my ozone mixologist, swishing my blood around with ozone and putting it back into me. The idea is that the extra oxygen molecule bonds with the pathogens and/or toxins and then eliminates it through normal detox channels. Die you Babesia Mo-fos!
Let's not forget that it took 8 years before I was properly diagnosed with Lyme-MSIDS. Also, in those years, the numerous doctors I saw refused--yes, refused--to test me for any tick disease despite my history of multiple tick bites? Yet, "they" say the US has the best health care in the world. Pathetic, is more like it. Maybe you think I'm just a whiner and maybe I just had dumb luck with the 20 doctors I saw over those 8 years? Think again, because I'm not alone. There are hundreds of thousands of Lyme-MSIDS patients who experienced exactly this level of care and have lost decades of their life dealing with this clusterfuck of a disease. The anger we feel is justified. Corporate greed (surrounding the diagnosis, treatment and vaccines for Lyme) literally makes and keeps people chronically sick.
Yes, that is anger you read in my words. Sometimes, Mr. Wild Dingo and I will disagree about how to move forward in treating Lyme disease. Treatment is at best challenging. It can be horrifying, disgusting, unbearably painful, risky and yes, even fatal. So, when MWD gets worried about the risks of the next treatment I should do in the hope of gaining a little bit of my life back, he’ll argue that I should just stop because, “Nobody ever dies from Lyme disease,” he’ll claim. While I don’t blame him for his worries about the risks, he doesn’t see the weekly obituaries I see in the Lyme community. We lose people all the time to this politicized disease, which has a paltry definition, diagnosis and treatment standard driven by corporate greed. Yes, people do die from complications of Lyme disease. Rarely, a Lyme victim can die quickly, like this case of the 17-year-old boy, who died from Lyme carditis. But mostly, a Lyme death is lengthy, painfully dragging out for years at a time. Yes, people do die from Lyme disease. They suffer horribly before their deaths. Yet, Lyme disease only draws public awareness when death happens unexpectedly and quickly. The rest of us, who continue to have symptoms and pain are apparently not in danger simply because we are still breathing. This is the pathetic standard of care and unacceptable logic that the Lyme community faces from the US standard medical system. Think about that this May during Lyme disease awareness month and think about what you can do to help make a change as activism opportunities rise that month. Because at the rate of this growing epidemic, if you don’t contract a tick-borne illness yourself, you will know someone who does.
I refuse to end on such a angry tone. So here's a pretty cool shot of Siamese Twin 'Shrooms.
The Fairy Paparazzi didn't find any fairies at home. Never give up on Fairies!
We have no idea how you manage to put up with what life has dealt you. We admire you so much for your persistence and courage. We just wish someone would find a way to make you 100% back to Julie!!!
Woos - Lightning and Misty and Mom
Your writing touched me. I feel for what you are going through and agree 100% with you on the state of LD as seen by the standard western medical establishment. I have started treatment with a Lyme specialist that has given me great hope. His name is Joseph Jemsek, his clinic is based in Washington, DC. I am on my 4th month of detox and on the 1st round of oral antibiotics protocol. He goes slowly, addressing the constant detox as he treats with antibiotics and watching over your gut. Concurrently, I started seeing an acupuncturist who is supporting the systems that are most affected. What I have found out that it is emotional fatigue what causes the most pain. I am determined, as you are, to get well. Dr. Jemsek said that he thought the whole treatment would last around 15 months. I am telling you all these for comparison purposes, to see if it is of any help and to share it with a "lyme friend".
Chin-up, my friend.
Part of why I'm visiting today is that somewhere recently I heard someone say that they were recently widowed as their wife had died from "complications of Lyme disease." As I haven't been blogging much, and had not seen any posts from you I FREAKED out. I knew that you were feeling shitty last time I'd read a post. Like Kathie, I admire your courage and spirit so much. Please know that you are in my thoughts, as well as Otto's and Osa's. - Lisa