I think it's Lyme & Co.

I'm 37 years old, and I suspect that I've had Lyme & co for over 25 years. I grew up in the woods in SE Indiana (an hour from Cincinanti, Ohio), and as kids, we were bitten by ticks dozens of times every day. We were told to make sure we always got the head out, but other than that, we had no idea they were dangerous. When I was 13, I started to have joint pain and stiffness and joint crepitus, and also a perpetual headache that never went away, and I had already had a lot of floaters in my vision for several years. My GP thought it was just "tennis elbow" and a migraine (though it was actually pain from TMJ, a fact I wouldn't know for over 20 years), though a year later, when it was spreading to other joints, he said it "must be arthritis." By the time I graduated high school, it was in every joint, and no one ever could explain it (I had 3 negative rheumatoid tests). When I was 17, my pediatrician's new partner said I was a hypochondriac and refused to treat me, because, "If everything was wrong with her that she says is wrong with her, she wouldn't be walking around."

My first semester of college, I started having neurological symptoms. My last semester of college, I had my first temporal lobe seizure. Every few years, a bunch of baffling and inexplicable new symptoms cropped up, with doctors unable to explain any of them. Even the diagnoses I received did not lead to any treatment or improvement in my life. Even my "flat lining" adrenal glands...after years of treatment, they're no better.

8.5 years ago, I became unable to work when my right vocal cord became completely paralyzed for no reason. I was a professional voice worker. We used to joke that I as 99% disabled, and all I could really do was voice work, then I lost my voice, but I was denied SSDI, Medicaid, Unemployment, even longer-term MetLife disability insurance payments (they cut me off after 15 or 18 months, I can't remember which). I fell through a hole in America's social safety net, even though I had disability insurance.

On November 4, a new correlation study was released. Unless my math is wrong, people with idiopathic vocal cord paralysis are 56 times more likely to have Lyme disease than the general population (2.2% vs .039%). I just hope my brain hasn't turned off the nerve permanently! I would dearly love to have my voice back. I miss talking without pain, I am a song writer who can no longer sing on key or even carry a tune, and I've lost all nuance in my vocal tones, so I often sound very irritable when I am just trying to clench my throat enough to talk. I used to be able to do voices, I could do an impression of anyone, sing and sound like anyone from Bob Dylan to Natalie Merchant, I was in more plays than anyone in the history of my high school, I was in multiple choirs. Now, that's all gone.

about 2.5 years ago, a friend of mine whose symptoms had been very familiar was diagnosed with Lyme disease, bartonella, babesia, and mold toxicity. Like me, she'd been told that she should go to the Mayo Clinic. Unlike me, she actually was making calls and trying to get an appointment (I went with a functional medicine doctor locally instead, who diagnosed me with flat-lining adrenal glands, oxidative stress, detox impairment, multiple vitamin and mineral deficiencies, subclinical hypothyroid, and a few other things I'm sure I'm leaving out). Neither source would've given me the right diagnosis.

I realized I likely had Lyme disease, and, after I first realized this was a possibility and started researching it, my dog had a bull's eye rash on her stomach. This is a dog who had recently gotten out of the fenced yard, run around the woods for 2 hours, and come back with 93 ticks. I had pulled them all off and she had seemed fine, but then, bull's eye.

I took her to the vet, but he insisted that it was not a Lyme disease rash. She started eliminating in the house and stopped behaving, and then she died. I do believe it was Lyme disease and I've been thinking about getting a different vet ever since, while at the same time, knowing I need to start seeking diagnosis and treatment.

When I lost my job (technically, I "resigned for health reasons," or so my termination letter said), I lost my health insurance. I've had no income since 2010, but I've had a fiance who was supporting me. Two weeks ago, we got married, and he added me to his health insurance, so now, it's time to launch into getting well! Like a wedding present from the medical research community, the correlation study about Lyme disease and vocal cord paralysis was published the day before our wedding.

We wanted to wait to get married until we could live together. Lyme disease and the failure of Obamacare to be affordable made us move up the date, though after a nine-year engagement, it was about time, anyway. We still hope he'll find a job in the Greater Cincinnati area soon.

I must admit that I'm overwhelmed, even though I've had all this time to do "research." I chose an LLNP in Indianapolis (though I live on the same road where I grew up, much closer to Cincinnati), but maybe I should go back to my Functional Medicine doctor first. He was really good, and I trust him, whereas I know that so many "LL" practitioners are less LL than I am! Maybe, even if he is not LL himself, he can refer me to someone that I know is good.

I dared not begin treatment without health insurance, with the risk of things like seizures from herxing, heart block, etc, not when I had no way to pay for medical bills. My husband and I live in different states and only see each other on his weekends, I don't even have Internet access at home because our resources are spread too thin, it's not like we really have the financial resources to pay for my treatment now, but without health insurance, it was totally impossible to even begin. We also can't afford to keep waiting to start treatment.

So, here I am, beginning. I'll have to nurse my mom through a hip replacement that she's getting next week, but once she's recovered and doesn't need my help to get around, it's MY turn. I'm going to be sick in bed. I'm going to be getting worse so I can get better.

I'm scared about getting worse, but I know that I'll have to. It's that or give up and let this eventually kill me. I want to have a life. I've been getting sicker and sicker since I was 13 years old. It's time to get better.


(I actually think that I have Lyme disease, bartonella, and babesia...the symptoms fit.... I've been bitten by "dog ticks," "deer ticks," "wood ticks," and a few lone star ticks, probably tens of thousands of ticks in my lifetime, though I am not sure I've ever been bitten by a black-legged tick.)

We actually have a lot in common, Susannah. I grew up in the Western US, but I have had many of the same experiences as you with ticks and not getting any help from the medical community - but my journey has been longer at this point, as I was first infected at the age of 7 and although I was finally properly diagnosed at the age of 44, the pharma abx treatment failed me and I got much worse, including seizures, serious cognitive dysfunction and much, much more.

I did heal once from these infections, back in 2010 - but my adrenals came crashing down, taking my thyroid with it due to a lot of family stress, and then I had a tick attach and... I was back in the fight again.

I would encourage you to take this time (while you watch over your Mom) to detox and make sure your diet is in a good place. I read your other thread about your diet, so that's a good start as long as it works with your body well. This is how I finally managed to get to a better place to start treatments after many years of living with these infections without effective treatments.

Another thing to consider, is the use of herbs, homeopathics or other natural medicines protocols in your treatments. Maybe your Functional Medicine doc would be more open to these possibilities.