Opinion: Ogdensburg woman with Lyme disease thanks public for help
To the Editor:
I had slowly developed some health issues since my last pregnancy (3 years ago), continuously making doctor appointments to check things and also attempting to make changes in my lifestyle and diet, trying to get relief. It started with severe head/neck pain. I became extremely ill this past December (later found out viral meningitis); after a lot of doctors and very close calls, attempts at aiding in my illness failing…even causing me to become even more ill.I was bed-bound nearly all of four months after falling extremely ill. At this point we had only discovered that I had a severely, almost non-existent, immune system. As we were suspicious of some sort of undetected illness, Lyme disease- we were correct. We were advised to get to a specialist ASAP.
The problem was that there are only a handful of doctors in the U.S. that know how to deal with this disease. Because of the poor, unreliable testing for Lyme disease, most people are not able to even get a diagnosis before they are extremely ill -- some die from other issues that arise because of Lyme disease, and because they are treating the wrong illness.
Co-infections that come along with Lyme disease (Bartonella, Babesia, Rocky Mountain Spotted Fever- to name a few), slowly kill your immune system and cause severe inflammatory issues (masking itself as many other illnesses- such as bad allergies/sinus infections), this is why it is called the "great imitator."
It is also nicknamed the "suicide disease" because there are so many individuals suffering, with no guidance, and the CDC not recognizing how poor the testing is- and how many individuals are suffering from Lyme/vector borne illnesses. I've been healthy/active individual with a healthy lifestyle. I just turned 30 years old and I have three children (10, 9, and 2).
The issues this disease have caused me could fill a page. The medications, the vitamins, surgeries, IV medications/infusions, the trips to a doctor who is outside our network of coverage- just to name a few things, were extremely expensive. My first appointment, I was told I was too ill to fight the infections that were attacking me and slowly deteriorating my body. I have been on certain protocols and attempting to do exactly what I am told to do.
I've had to be my own advocate/doctor to seek out help. I've had to request my own testing through specific companies, go through genetic testing (also through another lab- and working on learning about specific mutations I have that affect my health and what I can and cannot benefit from, from vitamins-medications, to how my body breaks things down).
I am going to attach a link to my fundraiser page where there is a little more explanation, as I don't want to write anymore of a novel here. I am also a military wife -- my husband is currently working in Mississippi while I remain here for a short-term help/support/treatment where my family is able to help me. Many came to me quickly wanting to start a fundraiser, so many have contributed through my fundraiser, as well as sending cards/donations in the mail.
A jamboree was held for me on June 10. I wanted to issue a public thank you, extending our gratitude for the help and support- and have so many to thank, I would not be able to do individual “thank you's.”
I have heard some radio ads about Lyme disease.. and also heard there are passing notes/info in the schools here -- which is great. It is a terrible name, as it is not just one illness, the education ranging from our medical providers to the funding for better testing -- to the politics and social stigma about these illnesses are far from what they seem. It is not just from a tick bite, and awareness needs to be made about all of this.
To viee the fundraiser page, visit https://www.youcaring.com/brookeandleonmontroy-770102.