You just had to ask…
First of all, let me clue you in to a few things in case you are one of those people who do not know me personally. I am a rebel. I have been a rebel since birth. It is most likely in my DNA. (Actually, given the results of my DNA test, I can guarantee it.) I stick up for the underdogs, and I am not afraid to say what I think.
About. Anything. To. Anyone.
Three years ago, I was tested, (not CDC positive) and diagnosed with Lyme Disease, by not one, but 3 healthcare professionals. I was treated with 2 rounds of Doxy., and when I finally found a Lyme Literate Nurse Practitioner, I was treated with more oral, and finally IV (PICC Line, antibiotics, probiotics, and supplements. I “herxed” like hell, but through it all, the only symptoms that showed improvement were my neuro symptoms. Unfortunately, my LLNP moved, and I had to stop treatment. I am continuing to be diagnosed, and only getting worse, as I am unable to tolerate many prescription medications.
Lyme Literate Doctors, do not grow on trees. They are difficult to find, expensive, and more importantly, most do not accept any form of insurance. When you are forced to see a regular Doctor (PCP), you will most likely find that they either do not believe in Chronic Lyme Disease, or feel that because your tests are CDC negative, that you no longer have Lyme Disease. Well, let me tell you, and them:
That is total Bullshit.
There are 3 different types of “Lymies”.
1.“Oh, I had “Lymes” disease, but I’m fine now.”
Yes, there are people who get bit by a tick, have a rash, and flu-like symptoms, take a round of antibiotics, are happily cured, and go on with their lives, never having the disease rear it’s ugly head again. (These are the cases that doctors focus on, and use as examples of how the disease works.)
This is the exception not the rule.
2. Celebrity Lyme claims: “Look at me! I’m just like you!” NO, YOU ARE NOT!
High profile celebrities. They come out of nowhere, and declare that they have been suffering with Lyme Disease for months or years. They give interviews telling the public how they were bedridden, could not perform, had seizures, and paralysis, but were cured using some European treatment, administered by an elite team of doctors, in some far away land. Well really now, who gives a shit. None of us can afford that. You are doing the public a disservice. You have money, and celebrity status. If you really want to help, get out there, and fund some research, open a treatment center, Get on our side. Petition the CDC, and the IDSA for change.
If you don’t really get out there and help, then I’d appreciate it if you would just STFU already.
3. The Warriors.
Then, my friends, there is “US”. The average person with Lyme Disease, or any other disease that may or may not be related to Lyme Disease, and who is probably also diagnosed with ME, CFS, or Fibromyalgia, because; “We don’t know what the fuck is wrong with you.”
Yep, that’s us, and we are pretty much screwed.
Whether you have been suffering for years, or months, in treatment, or not, able to work, or fighting for your disability benefits, we are all in the same boat. We have all been diagnosed, misdiagnosed, labeled, tested, poked, prodded, x-rayed, scanned, laughed at, dismissed, and ignored.
It’s all in your head… Here, take some Prozac.
It’s time for this mistreatment, and malpractice to end. Yes, I said malpractice. It has been more than 40 years since Lyme Disease was “discovered” in Lyme, CT.. Fourty years, of lies, misinformation, patents on bacteria, and vaccines, (none of which have worked, BTW), fourty years of cover-ups, denials, suffering, and death.
Whether your infection is from Borrelia Burgdorferi, or one other hundreds of strains of the Borellia bacteria, whether you have a co-infection, (You probably do.) or not, you are in for a rude awakening. The only Borrelia strain mentioned in the IDSA guidelines is “Burgdorferi”. Look it up. IDSA
“There are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the USA, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.” ILADS
No one gives a shit about Lyme Disease. Especially, Chronic Lyme, or what doctors like to call, “Post Treatment Lyme Disease Syndrome”. (PTLDS)
At least not the CDC, IDSA, or your PCP.
Chances are, once you become ill, you will spend months, years, or decades trying to find a diagnosis, and treatment that works. There is not a single treatment that works for everyone at this stage. I believe that is because we are not all infected in the same way, or by the same bacterial strain, (or strains), and various co-infections. We must not forget that we are also all genetically different, with a variety of gene mutations, that may make us more or less susceptible to certain diseases, and may affect how our bodies accept treatments.
That being said, I think what we need is someone, or a group of someones, willing to take a bunch of us who are chronically ill, (I will volunteer) and take samples. Samples, of blood, urine, tissue, spinal fluid, brain tissue…whatever, and test it. Do whatever they have to do to determine what sort of bacteria, virus, or parasite is affecting our health. We need a comprehensive study, that is unbiased, and not tainted by bureaucracy. We need scientists. Not Doctors, Not the CDC, or the IDSA. No CEO’s, and no one who can be bought. We need the results to be undeniable, reported, and utilized to create treatments, and cures. We need action now, and no, BIG Pharma, you will not charge us our first born to be healed. I don’t know, maybe we can get Elon Musk in on it. He’s helping Puerto Rico, why not an even bigger humanitarian campaign?
On that note, we also need Lobbyists, to Lobby against Lobbyists.
Woe be to you all when the truth comes out that you’re all in cahoots with each other, to keep the world sick, and buying your poison. Shame on you.
Well, I have gone on with this rant for long enough. It is only out of frustration that I “act up”, as my mother would say, but things like this need to be said, need to be shared, and never forgotten, or left until “Awareness Month”. This is a daily fight for millions, and it should never be forgotten, because you could be next.