This post has nothing to do with Jameson Irish Whiskey with lime. But it has everything to do with Jamison the Irish human with Lyme disease. Sorry about the misleading photo, but try to look at it, if you will, as a visual pun (there’s probably a term for that, but I don’t know it).
I have Lyme disease. I know nothing about Lyme disease. The end.
Just joking. But seriously, I rarely, if ever, talk about Lyme disease (or my other conditions) on this blog, so I am going to try to change that.
Most of you probably don’t know this, but I was diagnosed with Lyme disease back in January. It was a shock to me. And not because it was a devastating diagnosis (although it may turn out to be). I was confused. And I mean beyond my normal foggy brain.
I know very little about Lyme disease, but I realize that it has potential ramifications to my life. For the last six months I’ve kind of been living in denial, or rather a state of, oh I don’t know, procrastination I guess?
My mentality with Lyme disease has been, well, it’s not going to kill me (although I suppose it could, maybe? But probably not), so I’m just going to get around to researching and treating it when my body allows me to, which may be never.
Having said that, let me try to break down what I know about my case of Lyme and the disease in general. And feel free to correct me on any facts (or just offer advice) in the comment section.
Lyme Disease Diagnosis
A few months ago I sent my blood to a lab named Igenex. The results came back with the IgM and IgG tests positive for Lyme disease and there was a very low positive IgM for Babesia. Now I would love to explain what those things mean, but I know too little about them to really do them justice. However, a good friend of mine with knowledge of Lyme and MECFS (myalgic encephalomyelitis / chronic fatigue syndrome) and many other diseases, had a lot to say about my diagnosis.
She said that because I have two positives for Borrelia and one for Babesia, I may have been bitten by a tick, which is almost unimaginable, mainly because, well, I haven’t walked outside in nearly three years. So naturally I am skeptical about the diagnosis. How could I possibly have a tick borne disease without being bitten by a tick? Or was I somehow bitten by a tick while being bedridden?
I think the latter is very unlikely, but I suppose it is possible, somehow. What is much more likely is that I was bitten a long time ago and am now dealing with the consequences. But as I’ll explain shortly, even this makes little sense.
The last, and probably only time I remember being bitten by a tick was when I was playing baseball in high school. This was at least ten years ago.
But even so I’ve heard that the tick has to stay attached for 24 hours (36 to 48 hours in some cases) for it to transmit the disease and I took off the ticks that bit me in high school within an hour.
And I’ve never seen the red circle of death (or what looks like a nipple above) on my skin, which usually shows when Lyme disease is transmitted by a tick.
So the theory of contracting Lyme disease a decade ago and the symptoms not showing up until now, or possibly six years ago when I first became sick, seems unlikely. For one thing, the timing doesn’t add up and the doctor who diagnosed me with Lyme disease said the test showed that the disease was in the acute phase, meaning that I would have had to have been bitten fairly recently. Either that or perhaps I contracted the disease in another way….
I have heard that Lyme disease can be transmitted by flies and mosquitoes, although the CDC says there is no evidence that proves this. So transmission by mosquitoes or flies could be completely false, but if it is possible, it would make my diagnosis seem more accurate.
The CDC also says there is no evidence that shows pets like cats or dogs can directly transmit Lyme disease, however, the ticks can attach themselves to the animal and then find their way to a person. I think this seems like the most plausible way that I could have contracted the disease. My family has a dog and three years ago when I was living alone I often took care of a couple cats in my neighborhood. But I still can’t get over the fact that in order to get the disease, according to the CDC, I would have had to have a tick on me for two full days without noticing it. That just seems so implausible to me, especially when you consider that only one percent of visible tick bites actually cause Lyme disease.
I know that the ticks that transmit the disease are often very small and can be undetectable, but it still seems unlikely that I would be bitten in bed. What seems more likely, however, is the possibility of a false positive test.
But again I hit a road block with this explanation; as my friend said, “There are false positives for Babesia,” but I have positive tests for Borrelia, which decreases the odds of both being false positives. In other words, the tests would been seriously flawed for both to be wrong and even if one was a false positive (Babesia or Borrelia), I would still have the other, and in turn, Lyme disease in some form.
For the sake of prospective treatments, let’s say I definitely have Babesia. It is a blood parasite. That means, for treatment, I would have to take an antiprotozoal medication, in addition to antibiotics.
Lyme Disease Treatments
So far the only treatment I have attempted for Lyme is colloidal silver, which hasn’t made me feel noticeably better. I stopped taking it a couple months ago, but I may try again at some point.
Another common method of treatment is pulsing antibiotics. My friend said that Borrelia forms cysts, which continuous antibiotics won’t treat. And for Babesia, I could take an anti-parasite drug like Ivermectin. I’ve heard this is not a risky treatment and it has been shown to kill Babesia. But if there’s one thing I’ve learned when considering treatments, it’s that even benign treatments can be risky when you’re as sensitive as me.
I have never taken antihelmintic medication, but I have taken antibiotics for MECFS and I should probably try them again to treat Lyme disease, at least at some point as a cautious trial.
I have, for instance, taken Azithromycin, which seems to be well tolerated among people with Lyme and ME/CFS.
My friend, the Lyme disease expert, says “don’t take Flagyl, under any circumstances. It damages the nervous system.” So I won’t be trying that one.
She also says, “The theory that taking a short course of antibiotics will only kill the weak bugs and leave the strong bacteria intact has no objective proof to back it up.” So if I do try antibiotics, I won’t hesitate to stop if I feel worse.
That’s all I know about Lyme disease. Please take this post as information I have gathered from fellow patients and websites. I have only done some fact checking. In other words, if you are as new to the Lyme world as I am, do your own research and get acquainted with the disease through patient groups and reliable websites.
Lastly, since my Lyme diagnosis, I’ve been reflecting on my association with the chronic illnesses I have. I wish I didn’t have to associate myself with any, and there have certainly been times when I have preferred denial or dissociation instead of attaching myself to a disease. But for the last year or so I have made a conscious effort to advocate for MECFS awareness, and in turn, I have had to own the disease. I have had to tell people that I have a disease that is sometimes called chronic fatigue syndrome. Now that I have Lyme disease, however, one might think I would just tell people: “I have Lyme disease,” instead of battling a siege of ignorance to legitimize chronic fatigue syndrome (MECFS), a disease that many people still think is a joke. But really, where’s the challenge in that?
The difference between society’s perception of Lyme and the perception of MECFS is that Lyme is misunderstood but given respect that many people don’t give to MECFS. And that needs to change.
I’ll tell you right now, I won’t be leaving MECFS out of the conversation; it’s too ingrained in my mind for one, but also, that would be like driving by someone dying of thirst when there’s a town full of water just on the horizon.
I know very little about Lyme disease, I do know that its mysterious nature is eerily similar to MECFS and both seem to have been on the cusp of scientific breakthroughs for decades.
Both diseases are riddled with uncertainty, a lack of government research funding, and have almost no advocacy from celebrities, even those who have the diseases. I recently read, for instance, that Alec Baldwin has Lyme disease, yet it seems like he doesn’t give much attention to advocacy. He didn’t mention it once in his memoir.
So hopefully both MECFS and Lyme disease get some high profile people to champion the causes soon. In the meantime there are several organizations working to do just that.
There is an organization called the Global Lyme Alliance that is doing great work with Lyme disease. On August 24th the GLA is hosting its “SubLyme Soirée” in Chicago. The event will feature some of the top chefs in the city and there will be an auction with art and vacation getaways. If you or anyone you know is interested, I think tickets are around $100 and the proceeds go directly to the GLA, whose efforts to raise awareness for Lyme Disease have been vital.
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Also, thank you to my lovely friend in San Francisco who sent me the care package with kombucha tea! For privacy, I won’t say your name, but please send me your address (I lost it) so I can thank you.