This post is meant to be informational and it should not take the place of any medical advice you have received from your doctor. That being said, I have tried to assemble some of the typical questions I hear from people new to the lyme world and/or those who are just wanting more information.
Q: What do I do if I think I might have Lyme?
A: Lyme is called the "great imitator" because many people with Lyme Disease are mis-diagnosed with other ailments such as MS, rheumatoid arthritis, lupus, auto-immune disorders, cardiac issues, thyroid and adrenal fatigue and mental illness among others. One option is to search online for a diagnostic check list of symptoms.
Q: What if I don't remember being bit by a tick and/or I was bit by a tick but I never got a rash?
A: Based on information taken from the ILADS website (International Lyme and Associated Diseases Society) less than 50% percent of those infected remember being bit by a tick. Infected ticks can be very hard to see, commonly only the size of a poppy seed and they inject a numbing agent, so the host typically cannot feel the bite. In terms of expecting a bulls-eye rash as a definitive sign of infection, you cannot rely on that either. The same research society states that less than 50% of people diagnosed actually had a bulls-eye rash after their tick bite. In some cases, it is very hard to detect even if it is there, like in the hairline, a very common place for ticks to attach.
Q: Is it true that it can be transmitted in ways other than a tick bite?
A: Yes. Lyme disease is caused by a spirochete organism infecting the human body. There are three species: B. burgdorferi, B. garinni, and B. afzelli, but these are commonly grouped into one category: borellia burgdorferi. It is a bacterium that takes up residence in the host body and can be transmitted not only through the bite of an infected tick, but from mother to child in-utero, through breast milk, sexual transmission or through blood transfusions. Other forms of transmission include mosquito's and spiders. Scientists have come out with fascinating studies that show spirochetes existing in these arthropods.
Q: Who is at risk?
A: The answer is- anyone. You can get Lyme Disease walking in a city park or from your lawn just as easily as you can at your favorite vacation spot or in the rural area you live in. As a whole, children are more susceptible (because they are low to the ground and tend to be on the ground more often) but so are wild land firefighters, park rangers, outdoor sports enthusiasts, hunters, ground/lawn/tree care individuals, etc. Those at an increased risk include anyone who has had sexual contact with someone who has Lyme, anyone who has had a blood transfusion or has a mother/close family member with Lyme or suspected Lyme disease.
Q: I can't afford to get tested. What do I do?
A: Go to This site for more information about financial assistance. Based on your family income, you may qualify for assistance.
Q: I think I need to get tested. What is the next step?
A: Go to the IGenex, Inc. website. Click on the contact us tab. Call and request a test kit. (1-800-832-3200) They will send it to you for free. It comes with a pre-paid FedEx envelope, the vials needed for the blood sample and all the paperwork you need.
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| This is your kit. |
Take your test form to the physician that will be signing off, agreeing to have you tested. Depending on your physician, some will not even agree to this. If you are not able to work with your primary care physician, IGenex, Inc. will accept a lab request from any physician, including a pediatrician, acupuncturist, chiropractor, optometrist, or naturopath. A Lyme Literate doctor (called an LLMD) is also a good option and you can find one in your area by going to the ILADS website for a physician referral.
You will then take your kit and signed paperwork to the blood draw facility of your choice on a Monday, Tuesday or Wednesday (so that it gets to IGenex, Inc. during open hours). The lab will read the instructions printed for them and when the specimen is done being processed, you will pack the FedEx bag with necessary paperwork, your blood sample and send it off in the pre-paid envelope at a FedEx location on the same day as your blood draw.
Q: Why should I go through IGenex, Inc.? My doctor said that they could pull a western blot (elisa test) and it might be covered better under my insurance.
A: Courtesy of the ILADS website: "The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity." IGenex, Inc. states that they are "a reference laboratory that uses state-of-the-art clinical and research testing for Lyme disease and associated tick-born illnesses."
Q: I see that IGeneX also tests for co-infections. Should I get any of those done?
A: If you are already collaborating with a Lyme-Literate physician, they will have great information for you. If you are flying solo and trying to find a doctor who will sign your IGeneX request form, I personally would only test for Lyme (lab request numbers 188 and 189). If you end up having Lyme, your LLMD will discuss co-infections with you and determine a course of treatment/testing.
Q: I have already been tested for Lyme and it came back negative/and or I have already been treated. Is it worth it to get tested again?
A: LLMD's are aware of something called chronic lyme. This happens either after someone has taken a round of antibiotics to treat lyme but symptoms return, or the period of time that passes after the initial infection, and lyme begins to run rampant in the host body. In either of these cases, if you did not have an accurate test through a reputable laboratory, my non-medical opinion is that it is absolutely reasonable for you to get tested again.
Q: What is the cost?
A: To run a basic lyme diagnostic test, my LLMD used options 188 and 189 on the IGenex order form. This shows a Western Blot IgM and a Western Blot IgG. Each test is $105, so the total to IGenex is $210. My lab also charged a $25 draw fee. I submitted a claim form through my insurance company once I received my receipt in the mail from IGeneX (expect it in about three weeks after you send off your sample) and my insurance ended up paying for half of my test fees.
Q: When can I expect my results?
A: IGenex states that you will typically have your results within three weeks. They will be faxed to your referring physicians office. By law they cannot give you results over the phone, but you can call when you send in your kit and request a copy sent to you by mail. I always recommend this.
Q: What do I do once I receive my results?
A: This can be a very confusing process. The first thing you need to do is bring it to a LYME LITERATE DOCTOR who can read not only the CDC and IGenX conclusion, but understands how to read all the band findings listed beneath. (To find a LLMD, refer to the ILADS website under contact>physician referral). Here is another great website that helped me make sense of my test results while I was waiting to get in to my LLMD. These websites listed are not at all purposed to be a diagnostic tool- please refer to an LLMD in your area for health and diagnosis recommendations.
Q: My LLMD has told me that it is positive. I have Lyme Disease. Now what?
A: First, I am sorry. Many have walked this road and are walking it with you. The good news is that many ailments you have struggled with may now have an answer. There are many different options of treatment out there, and everyone seems to know a way to cure it. It is varied, from oral antibiotic use, to IV antibiotic, Rife machines, magnetic devices, vitamin therapy, ozone, essential oils, herbs, homeopathy and the list goes on. Guard yourself from getting overwhelmed with options. Pray about it and once you have done your research, go with what you feel led to do. Finances can be a huge factor in considering treatment, and I know the burden that issue alone carries with it. For me, I decided on a specific protocol, based on treatment results (Specifics listed here). We will continue full steam ahead, and do our best to keep a positive attitude and expect healing.
Surround yourself with a good support group and focus on basic health while you are preparing for treatment. Get on a good probiotic, maybe even some methylated vitamins and consider going off of gluten and possibly dairy too. These two food groups are the biggest culprits in exacerbating inflammation, which you will want to avoid. Definitely avoid alcohol and smoking/nicotine and be kind to your body. You may need to make some big changes in your life to accommodate this. Your body will need rest, and don't feel shameful for that.
Journey on, and from one lymie to another, "keep on keeping on." Don't give up! :-)
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