Does my fine over taxed state have a health department anymore? Or did they decide to get rid of it while I was too ill to notice? Did any of you notice? Or were we all too busy watching possums eat ticks while trying to make sure nobody noticed chickens could do it all along? Or watching the media coverage warning of mosquitos who probably won’t ever even make it this far north to a cold climate to bring us Zika?
This post is happening so much earlier than I intended.
I intended to paint the details of my sordid tale first.
Then I thought I could start filling in specifics on various things I’ve learned on this terrible journey through tick borne disease hell the last 5 years. Then I could finally share the important things I’ve learned along the way and hopefully use my nightmarish roller coaster ride to help others as well.
I intended to do this in my own slightly strange fashion which is through providing the facts but trying to somehow maintain the positives. Above all else. This has always been my personality. I know my ability to find something good in bad situations. My humor, and my ridiculously idealistic outlook on life are a large part of how I’ve always managed to just keep swimming. (that’s what chronically ill people like me do. we just keep swimming as hard as we possibly can. In my oddly humorous must maintain the positives at all costs fashion, I even refer to it as “channeling my inner Dorrie.” It’s a coping mechanism that works pretty well.
My story is awful. And I can’t possibly do it justice without writing a novel. I don’t have the attention span to read a navel anymore much less write one. Just trying to paint the basic details into a not too crazy picture so far has been so daunting. But I thought I could soldier on and paint the picture and let you all see that I am not a negative person.
I am still me under this fog of bacteria and parasites fighting to win out and take over my brains! The battle is ugly and exhausting and until recently had seemed never ending. it’s important to me that you all learn about my hope and my love of life. I have to tell the details for everyone to know how alarming it is. But I don’t want you to lose hope for me along the journey. I wanted you to know all this first. Because it is a central truth about me I want strangers to know and my friends and family reading to know is still here. Because no matter how hard I try and maintain my hope and my ability to laugh? It’s been really hard. And it just keeps getting harder. Nothing even makes sense anymore. I try and find a piece of info I wanted for one of my background posts trying to give the details but maintain the balance and the hope. Instead I was slammed up against a wall of insanity. Everytime I try and stay positive, something else pops up and screws it all up.
So I apologize in advance that this ugly post is popping up already. I still don’t plan to make it a habit.
As I sit here tonight waiting for my daily PICC line antibiotic infusion for a multitude of tick borne diseases to finish dripping into my heart, I find the overwhelming anger at the absolute insnaity of my appalling situation just too hard to swallow. but it needs to be written. It is so important you all know the danger. Everyone should be concerned of the risks and the danger. Most people don’t even know the danger because we have all been so terribly lied to about almost anything involving Tick Borne Disease. The lies, political maneuvering, and power of big pharma to try and protect its money have cost me years of my life I can never get back. Amazing years in my three children’s lives that can’t be recovered. I knew about ticks, did what my public health officials told me, and expected the system to work. But the system is so broken that the lies they tell everyone have created this insane situation where Physicians aren’t doing their jobs and patients are suffering and dying in ever increasing numbers. And nobody speaks out loudly enough for any of the madness to stop.
Right now I’m avoiding the Lyme topic. That will take years to properly debate. it’s never ending. I understand at first, I only had 4 bands on a western blot, not the 5 required for the CDC’s surveillance definition for the Physicians I saw in the beginning to properly diagnose and treat me instead of letting me continue to get sick while they dismissed me and shrugged my shoulders. But we’re gonna skip ahead for now. Tonight’s rant isn’t about this. It’s about Rocky Mountain Spotted Fever(RMSF). Rickettsia Rickettsi. Transmitted to humans by the American Dog Tick (This tick is a huge threat locally. And not in the habitat you usually find deer ticks, but in the very habitat they try and tell you is safe! More on this coming soon.) In fact, since I got chickens to protect me from ticks in my own home and yard by eating them all, I have been bitten twice apart. In locations 1/4 mile away from each other or less. In locations some of you may walk everyday without even knowing you could be catching something deadly. That’s right. DEADLY.
Rocky Mountain Spotted Fever is quite deadly. Especially if you do not recveive proper treatment in the first 5 days of infection. In fact, The CDC’s fact sheet on RMSF states “Typical symptoms include: fever, headache, abdominal pain, vomiting, and muscle pain. A rash may also develop, but is often absent in the first few days, and in some patients, never develops. ” I had all these symptoms and more and was dismissed for years by the medical system despite my increasing symptoms and declining functionality. In August of last year, I saw an infectious disease Doctor at a teaching hospital at the suggestion of my own baffled primary physician. He ran further tests for co-infections than either of the previous infectious disease Doctors I had seen. (I now know all 3 were Infectious Disease Society of America (IDSA) trained physicians. When I should have been seeking an International Lyme and Associated Diseases physician all along. But we’ll file that away for later too. ). He found a couple of co-infections nobody had tested for. Rickettsia and Anaplasmosis. I also had been testing positive by CDC standards for Lyme since a new bite and Erythmia Migrans bullseye rash in June as well. I still did.
So this IDSA Physician promises the moon. But doesn’t think either co-infection he found could be making me so sick. He suspects MS and orders months worth of expensive tests and visits to a neurologist for consultation. All while promising to help. I don’t know how much my insurance paid for all these tests, but i’m sure it was frighteningly huge. Then, he declared it absolutely wasn’t MS, and also couldn’t be any of my tick borne diseases I now finally had positive tests for. Despite my continued high inflammatory markers and high white cells and platelets and ever increasing symptoms, he swore it wasn’t tick borne illness making me sick. Then he gave up and suggested we try some Lyrica and see if we could improve my symptoms (it didn’t…because nobody had treated me properly. Even my antibody tests continued to increase. But the IDSA trained Docs all said no. None of them said woah! Rickettsia Rickettsi? That is rare here, but not unheard of. If you weren’t treated when you got it, you could have a very serious illness on your hands. It could be fatal. That’s what the CDC says. Read their fact sheet. Yet this guy just keeps saying I was treated with oral doxycycline so they couldn’t be the problem. Meanwhile, I had so may infections, my body didn’t even absorb the doxycycline at all in any of those early rounds. In fact, a placebo would have had exactly the same effects. (this is a hallmark of babesia, another of my co-infections as well.)
Yet, here’s our New York State Health Department Fact Sheet on RMSF:
This page is what set off my rant and made me forget my hope of presenting things in a clear concise manner while still maintaining hope.
At the very top, it says the page was last reviewed in November 2006. Almost 10 years ago!?!? Where is the updated info on RMSF? RMSF is increasing in tick populations at an alarming rate, just like Lyme and all the others. But now, here is another disease our Health Department doesn’t even keep valid or updated numbers for?
They do state that there are fewer than 50 cases reported annually.
They state, “RMSF is characterized by a sudden onset of moderate to high fever (which can last for two or three weeks), severe headache, fatigue, deep muscle pain, chills and rash. The rash begins on the legs or arms, may include the soles of the feet or palms of the hands and may spread rapidly to the trunk or rest of the body.”
They then go on to state that “Certain antibiotics such as tetracycline or chloramphenicol may be effective in treating the disease.” but doesn’t elaborate more fully on what anyone should do if these treatments are not effective.
They also state that one attack by a tick probably makes someone immune to Rocky Mountain Spotted Fever. According to everything I have learned from this illness and everything my LLMD has told me, this is completely false. No tick borne illness makes you immune after exposure. They simply are not viruses. They are bacteria and parasites. You can get them each and every time. Yet the Health Department says that’s not true.
The fact sheet does not say a single word about long term illness or even that RMSF can be fatal. It is as crazy as the physician at Albany Med ignoring all the facts and saying it wasn’t making me sick when he should have been rushing to treat it and prevent it from becoming fatal.
At the very bottom it says it was revised in 2011 but no indication they updated the numbers. By now, the number has to be much higher. How can our health department not try and do its job and help us? Why is my life deemed to have no value because I was bit by a tick while I slept in my bed in my home? How can this all be real?
I’m still pretty sick but I am so mad. If anyone has suggestions on who I can visit or contact at the health department to ask my questions? I sure would love to hear your ideas and suggestions in the comments. Maybe it will even help us all to speak out to those in politics about the complete and utter failure of the Public Health System to manage and treat the public heath crisis that is close to reaching epic proportions. If I was healthy, I’d be a force that might be able to enact some change. But I am still so sick with this illness I contracted here in NY that my health department wants to sweep under the rock and not even count, that I can’t do much. But maybe I can incite everyone else to help me speak out against this gross mishandling of a public health agency’s purpose.
It is only getting to get worse until we demand they stop.