This question provokes a lot of anxiety as the person suffering is wondering “ Do I need antibiotics?’ “ Will this be as scary of a process as I read about in social media discussions and online articles?” “ I don’t want to treat the wrong thing!” “ Why don’t my doctors know what to do ?” or “ Why won’t they just believe me?”
I walked through these agonizing questions myself and remember the terror and exhaustion well. How on earth did the medical system I served all those years get embroiled in controversy over this disease? Isn’t a disease cut and dry? Isn’t there a test that says “ Yes You have it, or NO you don’t?” Isn’t there a one size fits all treatment that works every time?
The answer to this is No. There is not a gold standard test that is accurate 100% of the time. There is not a standard treatment that works for everyone 100% of the time. That was bewildering to me as a medical professional back when I Was so sick.
As someone who has walked this journey ahead of you, and who has had over 3 years of formal training in Lyme Disease Recovery, Here is my response to these questions:
- Lyme Disease by its very nature SUPRESSES immune response. For that reason, the very antibodies that the tests are looking for in some people DON’T EXIST- so you will get a false negative test. The assumption is that if the antibodies don’t show up on the standard test then the disease is not there. This has been proven to be false. The standard mainstream science on all of this is VERY behind the times. That is the very reason why so many of us go untreated with this awful disease for years or decades. ILADS ( International Lyme and Associated Diseases society of medical doctors worldwide) tell us that the standard CDC Elisa + Western Blot can miss a very high percentage of cases.
- IF you would like to get tested anyway- go to your family doctor and ask for the standard ELISA plus Western Blot for Borrelia. After all a positive result is validation. However, this widely accepted test has several inherent flaws. First of all it tests for ONLY ONE STRAIN of the lyme bacteria, which is Borrelia Burgdorferi. In the US alone there are over 100 different identified strains. So if you happen to have one the less common ones – you will get a false negative. Also, after a tick bite, if the immune system will make the antibodies to Lyme, it will be between 2-6 weeks later. Therefore if your doctor tests you before or after that time frame, you are likely to get a false negative result, even if it is truly there. Most doctors will not even order the Western Blot unless the ELISA comes back positive. ILADS estimates that the ELISA misses well over 50% of cases so that one negative test result you had will stop your doctor from ordering the slightly more sensitive Western Blot. IF you are going to go for testing INSIST that your doctor also order the Western Blot no matter how the first test comes back. Just keep in mind this is not the GOLD standard it is held out to be by your doctor.
- IF standard tests come back negative ( like I explained above, due to the nature of Borrelia suppressing your immune response overall) and yet you have Lyme like symptoms such as chronic fatigue, brain fog, headaches and stomach problems, insomnia , joint pain, anxiety, depression, neurological issues and many other symptoms, then you may want to seek out more sensitive testing. You will need to find one of the small handful of doctors in your area who are willing to order these tests. The first one is called IGENEX immunoblot and PCR. IGENEX is a lab in California that tests for 9 strains of Borrelia as opposed to 1 like the standard test does. It is more sensitive overall and if you have a trained ILADS practitioner in your corner, you are more likely to get a more accurate result. ANOTHER alternative test is called the DNA CONNEXIONS test. Both of these tests are expensive and not covered by insurance unless you have medicare ( Medicare covers IGENEX ). I love these tests but I must admit to you that mine came back mostly negative with one aspect of it, the IFA, was positive. What that means is that my immune system was just so suppressed by the bacteria, it simply was mounting barely any response to it. There is a lot of science that explains this action by Borrelia which I won’t go into here, but ILADS practitioners are trained in this whereas MOST other doctors are not.
So even these tests are NOT gold standard and must not be used to prove that Lyme is not present. A positive test can be very validating to the sick individual however.
That is why I was so sick for 15 years, and why so many other people are debilitated with illness due to Borrelia bacteria in their body, and yet cannot get any care or validation at all. We are simply told “ You don’t have Lyme- stop, stop talking about this, it’s all in your head, or you are a hypochondriac.”
- In the end, ILADS insists that Lyme Disease in its late stage ( fully disseminated throughout your body) is a CLINICAL diagnosis. In other words, if you have many of the symptoms of Lyme disease especially with history of a tick bite, then we should treat it as such, even when there is no CDC positive test. This is where the controversy lies. This is the source of the “Lyme Wars” between the IDSA, and ILADS proponents. IDSA – the infectious Disease Society of America, will only use the standard testing and will only give the standard course of antibiotics IF you have the fully positive CDC test. The CDC admits on it website that the testing is not reliable, and that we are only reporting around 30,000 cases per year, even though they estimate it is more like 300,000 people per year contracting this illness. In other words you have around 1 in 10 chance of being diagnosed and treated properly (and we are all ok with that?) ILADS on the other hand will treat if suspicion is high enough to warrant it.
- So what do you do when you can only get negative results and yet you have many of the symptoms of late stage ( chronic) Lyme disease? What if you really don’t want to take antibiotics without the ever elusive proof of infection? Fortunately nature has given us wonderful gifts that WORK and are SAFE to use when we suspect Lyme Disease but cannot obtain the proof. This is another blog entirely, but over the decades many breakthroughs have been made for those of us who have suffered with Lyme disease but cannot get a diagnosis or any care for it.
My colleagues at the Uprooting Lyme clinic in New York and I have started using liposomal Essential Oil remedies that evolved out of the 7 years of research done by Dr Zhang at John Hopkins Medical Center in Maryland. We have found these formulas to be safe, and more effective than herbs that are used to treat lyme disease. They are providing a wonderful breakthrough option when used alone or in combination with herbs, tinctures, and other natural therapies. I will be writing more on this topic in future blogs so stay tuned!
We have received numerous testimonies from clients who have gotten their lives back, even when they came to us very very sick. We would love to make this your story too!
Go to the “work with me” button and book a free 20 minute consultation to ask questions and get a feel for if you would like to work with me or not. Or fee free to call our office for more information about how you can get started recovering from Lyme like illness!
513-301-7406
In health,
Theresa