Hi, I was hoping someone with more knowledge on Lymes disease could help answer my questions, I find myself a big stressed about the possibility of having Lymes and not knowing it.
5 months ago, summer, I was bit by a deer tick in South Carolina. The tick couldn't have been on me for more than 5 hours. I found the tick in my fair, attached to my scalp but I easily pulled it off. I had taken a shower that night and let my parents' dog sleep in my bed so the tick must have jumped on to me at some point throughout the night and discovered it early morning. 7-10 days later I had just ONE day of the typical flu like symptoms that went away after 24 hours. At that point I did not put consider the possible diagnosis.
So now 5 months later I don't have any symptoms but was recently made aware of Lymes through a friend and now I am terrified that it lives inside of me and I might not even know it. Is it possible considering the short attachment period, non prevalence of infection in SC, etc?! And if so what should my next step be? Should I get tested? Should I take a "just in case" dose of antibiotics?
Any suggestions or resources would be greatly appreciated!
Greetings -- good for you for considering the possibilities, but I wouldn't necessarily be *very* worried ... but some worry? Yes, I would.
In someone who is otherwise strong and healthy, it's possible to have only mild symptoms after a Lyme infection takes hold, because the immune system can battle the infection and keep it at a low level. I know someone who was like that ... a little more tired than usual, thinking it was just from working too hard ... but when tested for Lyme, was diagnosed with Lyme and another of several infections often carried by the same Lyme ticks.
You mention being anxious. Are you more anxious than usual? Sometimes one of the symptoms of Lyme is increased anxiety and worry, and it's not imaginary. Lyme can affect the body's chemistry and hormone levels and therefore emotions. Everyone's immune system reacts differently to Lyme ... but sometimes it IS just 'regular' anxiety from everyday life.
The 'traditional' approach taken toward Lyme is that the tick must be attached at least 'X' hours, but such a fixed number of hours may or may not be accurate.
The safe thing to do, and to give you peace of mind, is to find a Lyme specialist for evaluation and possibly some testing. The trick is to find a doc who takes Lyme seriously enough to do the testing and to know how to read the tests. In addition, a Lyme specialist will use different tests from other docs, and that provides more accurate information.
The sooner Lyme is caught, the better, because the longer it goes on, the harder it is to treat and cure. So given that you are worried, and given the downside of an untreated Lyme infection, it might well be worth the hassle and expense to get tested by a Lyme specialist. Having been through Lyme myself, I would in your situation probably get tested just to be sure.
You suggest taking some antibiotics as a 'just to be sure' approach, but I would not recommend that. The reason is that Lyme bacteria, while perhaps relatively easy to kill shortly after infection with a common antibiotic like doxycycline, will soon move into cyst-like structure in your body that they create to hide in so your immune system doesn't detect their presence and common antibiotics like doxy are not, by themselves, effective. A Lyme specialist would know what to prescribe.
Another reason not to try do-it-yourself medicine is that maybe half of the Lyme ticks also carry other diseases that need separate testing and different treatment from Lyme, and a Lyme specialist is (again) the one who can figure out what your symptoms indicate you should be tested for and then treated, if positive on the tests.
Bottom line: Lyme is not a do-it-yourself diagnosis or treatment.
You don't indicate where you live, tho you mention South Carolina. Fact is, Lyme is EVERYwhere, no matter that many docs believe it is isolated in certain parts of the country. Ticks can't read maps, and they go where they want and bite whomever they want.
The trick is in finding a Lyme doc who understands this more aggressive approach to diagnosing and treating Lyme.
There is a voluntary organization of MDs who take a more progressive approach toward Lyme and its co-infections, called the International Lyme and Associated Disease Society (ILADS). They have a website, at ILADS [dot] org, tho it is rather overwhelming with all its information. ILADS can probably refer you a Lyme doc near you, if you email to:
contact [at] ILADS [dot] org
and tell them where you are located and about how far you can travel from there to see a doc.
That's what I would do: see a Lyme specialist. They can be in any branch of medicine (general practice, immunology, etc.) but oddly enough are not widely found among the most logical of specialty in medicine, infectious diesease (ID for short). ID docs believe firmly that Lyme is hard to get and easy to cure and don't necessarily worry much about co-infections. Rheumatologists too are, as a group, rather dismissive of Lyme. But of course there are exceptions.
Knowing what I know now, and having been through 20+ docs before I got a Lyme diagnosis, I would go straight to an ILADS-type doc.
So, you may be fine, but getting checked out by an ILADS-type progressive-thinking MD is what I would do. Lyme won't just go away like the flu, tho your immune system may be able to hold it in check for quite a while. Better to kill it off as soon as possible, in my not-medically-trained opinion.
Hope that's not too much data, but if it's not clear, let us know. And let us know what you do and how it goes, okay? Best wishes --
I think you are wise to ask these questions! Lyme can be debilitating, so to me, having been through it, I would get checked out by an LLMD.
CDC testing often isn't helpful. Doctors who treat a lot of Lyme say about 30% of people with Lyme will test false negative on the screening tests. Another 20-30% test false negative on the Western Blot. I was neg on both.
You could get tested at IGeneX. They look at more relevant "bands" (antibodies) than most other labs. If your immune system is fighting it off, odds are good that you're making antibodies to it and something will show up.
A mainstream doctor probably won't be of much help. Nor will an ID doc, as they are taught not to prescribe antibiotics, even for a positive test if you don't have the expected symptoms.
An ILADS doc and researcher said last January at a patient conference that she recommends treating asymptomatic people who show evidence of Lyme, as she believes that eventually, the disease will outrun the immune system. She believes treating it early is easier than later.
I have heard of people getting Lyme within a couple hours of a tick bite. The study that resulted in the 24 hour number was highly flawed. It only used adult ticks on mice. Nymph ticks feed faster and are the primary culprit in Lyme infections in humans.
Also, critics of the study said they didn't wait long enough to see if the mice were infected. Unfortunately, the "24 hour" rule has now become part of the false dogma about Lyme.
Money spent going to a LLMD would not be wasted. You'll either get testing and treatment or peace of mind, both of which are invaluable.
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