People ask me for my current thoughts on Lyme in private messages from time to time. I thought it might be worth posting them here for a wider audience.
If you suspect you have Lyme, here's what I would suggest:
- If your symptoms began shortly after a tick bite, there's a good chance you have lyme or another tick-borne disease.
- If you suffered a bulls eye rash after a tick bite, you definitely have lyme.
- If your symptoms have no temporal relationship to a tick bite, you should not strongly suspect lyme, but it is worth getting tested by validated methods.
- The standard ELISA and western blot test kits for Lyme are reasonably good. Read this paper for a thorough appraisal of their value and potential pitfalls: https://www.aldf.com...asi_article.pdf
- Do NOT run specialty tests from labs that specialize in Lyme diagnosis. These generate false positives like crazy (Igenex for example is particularly bad). I don't know if there is deliberate collusion between them and Lyme specialists but either way the tests are unreliable.
- I don't think empiric trials of antibiotic therapy are a great idea if you don't have a positive test result or symptoms temporally associated with a tick bite. The risks of antibiotic therapy are hugely underplayed in the lyme community. You can do massive irreparable damage to your microbiome that can make you far sicker than you are now. The list of diseases associated with or caused by dysbiosis is essentially the entire list of chronic diseases that plague modern western civilization, everything from allergies to inflammatory bowel disease to diabetes and everything in between.
- If you do have a positive test and commence antibiotic treatment, pay close attention to your symptoms. If the antibiotic does not change your condition positively within a reasonable timeframe, DO NOT CONTINUE TREATMENT. There are people who advocate months and years of antibiotic therapy, with two and three drug combinations, believing improvement is just around the corner if they can stick it out longer or add another antibiotic to their cocktail. This is terribly misguided -- much damage has been done and many people have been sickened further by this mentality (I present myself as exhibit A).
- Avoid lyme specialists unless you have test results and a response to antibiotics that makes you certain you have lyme. They are better suited to treating tough cases than diagnosis. If you are familiar with the expression, "when you're holding a hammer, everything looks like a nail," then you understand why they think everything looks like lyme.
This is the advice I wish I had when I was younger. The problem is that except for the bulls eye rash, the symptoms of lyme are non-specific and shared by MANY, MANY other conditions. Latching onto the first diagnosis that seemingly explains your symptoms and offers treatment is an easy mistake to make. Keep an open mind, educate yourself to all possibilities, run valid tests, experiment, make sober decisions, and don't lose hope.
Edited by FunkOdyssey, 08 December 2016 - 07:28 PM.