Lyme Disease Awareness and FAQ

lyme-disease-faq

What is Lyme disease?

Lyme Disease (NOT "Lyme's" Disease) is a bacterial infection caused by Borrelia burgdorferi that can be transmitted to humans and pets by ticks when they bite you (if they are infected). Not all ticks are infected, and even if they are infected, that doesn't mean they will infect you if they bite you.

There are other tick-borne illnesses that can be transmitted with Lyme, like Babesia, Bartonella and Erlichia, which is why all of the illnesses together are referred to as "tick-borne illness," because there are more than one. These are also often referred to as "co-infections." You can have Lyme and not have any of the co-infections, but it is not uncommon to see people with at least one co-infection.

Right after a tick bite, if it is infected with the Lyme bug, it can cause a red, spreading rash that can sometimes look like a bulls-eye and can take 7-10 days (or longer) to develop. This can also be accompanied by flu-like symptoms (fatigue, joint pain, fever).

If treated right away, there is a minimal risk of long-term effects. But if it is ignored, or if symptoms go unnoticed, it could potentially develop into a severe illness involving any physiological systems. 

Lyme that goes untreated resulting in long-term effects (often called "chronic or persistent Lyme" or "multi-systemic infectious disease syndrome" or MSIDS) is often called the "great imitator" as it can be misdiagnosed as MS, Parkinson's, fibromyalgia, ADD/ADHD/autism, Alzheimer's and even psychosis ("it's all in your head").

The confusion comes from the constant battle between the Infectious Disease Society of America (IDSA) who do not typically acknowledge the possibility or severity of MSIDS and the International Lyme and Associated Diseases Society (ILADS), who believe MSIDS does exist and who also believe that the ultimate treatment is not just one protocol, but a patient-centered, integrative approach.

Do ALL ticks carry Lyme disease?

No. That being said, the lone-star tick has been shown to carry Borrelia spp. in the Southern US. The deer tick in the Northeast US is the most common host, but they are currently researching other potential carriers.

Isn't Lyme just in the Northeast US?

No. Lyme has been reported in every state and every continent. It is most common in the US in the Northeastern states as well as Minnesota, Wisconsin and Illinois, but it has been reported everywhere in the US, including Alaska and Hawaii. Texas and California are also increasing in reported cases of Lyme and other tick-borne illness.

Why is it so difficult to diagnose?

Unfortunately, the tests just are not accurate.

The ELISA test is the standard antibody/screening test and can miss around 35% of positive cases. Screening tests should be more than 65% accurate!

The Western Blot can help to confirm the ELISA test, but many people forget that this only measures exposure and not active infection. In other words, you could have a positive Western Blot and not have active Lyme disease if you have been exposed to Lyme disease in the past and were treated or managed to fight it off naturally.

Similarly, you could also have a negative Western Blot and have active Lyme disease, but if you test too early (it can take 2-6 weeks to make these antibodies) or if your immune system is so stressed out from being sick for so long that it isn't able to react enough to see accurate test results, you could get a false negative.

PCR testing is also available and tests for the actual DNA from the bug. Cultures are 100% accurate (either the bugs grow or not), however, the issue with both the culture and the PCR tests is that you must get a sample from where the bugs actually are. They aren't typically floating around in the blood (which is the sample most doctors use), and in fact love to hang out in the joints, organs and nervous system. Both tests therefore yield better results when taken from synovial (joint) fluid in cases of Lyme arthritis and spinal fluid (CSF) in cases of neurological Lyme. 

IgeneX is the preferred lab for Lyme/MSIDS testing as they specialize in tick-borne illness, keep up on research and test for more bands for the Western Blot, including bands 31 and 34, which are specific to Borrelia burgdorferi and are the actual bands the vaccine was made from.

Pharmasan Labs is offering a newer test with some promise, which measures the part of the immune system that responds to active infection specifically from Borrelia with supposedly more accuracy. They are currently developing tests for the co-infections. 

What are the treatment options? Do I have to take antibiotics?

This is another tricky aspect of Lyme Disease because every patient is different. In my practice, I literally have no two patients on the same protocol. You must treat the patient as each person is going to respond better once their entire picture is considered. 

There are often other things going on in people with MSIDS/chronic/persistent Lyme and it becomes sort of a chicken-or-egg dilemma of which came first - Lyme or these other things that we are finding (like yeast or bacterial overgrowth, heavy metal toxicity, mold contamination, a smoldering infection from a root canal, methylation issues, leaky gut, and more). Therefore, when one reaches an impasse in treatment, it is likely that something else is holding it up and needs to be addressed before the immune system can fully focus on the Lyme infection.

Treatment for MSIDS is multi-faceted and must include diet and lifestyle modification, immune support, probiotic/gut support, emotional support and detoxification support. I have yet to see a case of MSIDS return to health from treatment with antibiotics alone. 

Antibiotics may or may not be indicated in cases of MSIDS. But I will say, and many doctors will agree, that for acute Lyme (right after the tick bite), antibiotics are necessary and in fact, if given right away and at the right dose and for the right duration, could prevent it from ever reoccurring.

The ILADS recommendation for acute Lyme is a minimum of 6-8 weeks of antimicrobial therapy, while the IDSA/CDC is now even recommending 14-21 days.

Unfortunately, many doctors are still only prescribing a single dose of doxycycline, or up to a week's worth, which is not sufficient treatment, even from an IDSA/CDC standpoint. 

How Can I Prevent Lyme Disease?

  • Educate yourself - reading this is your first step! And see below for what to do when you get a tick bite.
  • Use protection - check out your options for bug repellant and landscaping - it can be a big help!
  • Be cautious around brush, woodpiles or any areas frequented by deer, rodents or birds. 
  • Keep brush, woodpiles and bird feeders away from the house, garden and play areas. 
  • Do nightly tick checks - ALL YEAR ROUND (there is never a month where there are zero reported cases of Lyme disease, at least here in Maine anyway). Use your fingertips and lightly feel all over your body as the tiny nymph ticks are the size of a poppyseed and you may not be able to see them. Don't forget the hairy, warm areas that ticks love - scalp, pits and privates. 
  • Don't forget your furry family members - do tick checks nightly on them too, especially if they go outside. Using a flea/tick repellant can help, but they can still bring ticks into the home.
  • NEVER ASSUME. Don't assume that there aren't any ticks if there is snow on the ground or if you are at the beach. In fact, most of my acute Lyme patients have been bitten in January, after the snow had started and they were at the beach (Kennebunk, ME is a hot spot for my practice). Ticks are anywhere their blood meals are - so anywhere with deer, birds and rodents. Also, as mentioned earlier, Lyme has been reported everywhere. Just because you may live in an area where it is less common doesn't mean it can't happen. Be cautious and informed, not paranoid. 

What Should I do if I Find a Tick?

  • Don't panic. Keep calm and SAVE THE TICK. ALWAYS save the tick. 
  • If it isn't embedded or doesn't look like a chocolate-covered raisin (engorged with blood), it hasn't likely bitten you yet. Just brush it off and do a tick check in case there are others. 
  • If it is attached to you:
    • DO NOT squeeze, smash, pinch, twist, burn or smother the tick as that actually increases your risk of infection
    • Grab the tick with tweezers as close to the skin and head as possible and pull straight up with constant pressure - don't yank or tug or twist
    • Put the tick immediately into a zip-loc baggy or other sealed container with a piece of moist cotton or paper towel
    • Wash your hands and bite area well with soap and water and apply an antimicrobial ointment or salve to the bite
    • TAKE A PICTURE OF THE BITE if you can, preferably with a ruler next to it to monitor size
    • Send the tick out for testing - this is SO MUCH easier and cheaper than the worry and testing for you up ahead if something should happen in the future - UMass or IgeneX are the options I recommend, but more and more labs are offering tick testing
    • Over the next 2 weeks, keep an eye on the area and take pictures if you want extra documentation. If you get a red area that continues to grow over 7-10 days that MAY OR MAY NOT look like a bulls-eye, or has multiple red areas - call your doctor asap. The rash is a positive test, especially if it is accompanied by flu-like symptoms (fever, joint pain and/or fatigue). If your doctor wants to wait and run a blood test, see a different doctor. Lyme is a clinical diagnosis and we can't rely on a test that misses up to 35% of positive cases.
    • If you don't get a rash, but get the flu-like symptoms, a migraine, stomach upset or other "weird" or odd symptoms, see your doctor asap. 
    • Again, the recommended treatment for acute illness according to ILADS is 6-8 weeks and even up to 3 months of antibiotics, so if your doctor recommends only a single dose or wants to wait a few weeks for testing, see a Lyme-literate doctor, do NOT wait for testing. This is another great reason testing the tick is so important. If you do happen to get psychosomatic symptoms (believing you have it when you don't), you can start the antibiotics and then stop when you get the negative tick test results. 
    • If you just have a bit of inflammation right at the bite site, no bigger than a pencil eraser that does not spread and no flu-like symptoms, it is likely you were not infected. Still, let your doctor know and write it down yourself for your records and include the date, place of the tick bite on your body and where you were bitten (beach, woods, home, etc). 

Where can I Find More Resources?