I never gave too much thought to Lyme disease until I began investigating MTHFR. Suddenly everyone had Lyme! While that’s a bit of an exaggeration, I certainly was not aware of just how common Lyme is and how much it masquerades as other chronic illnesses. Lupus, fibromyalgia, ME/CFS, multiple sclerosis, Epstein-Barr virus and viral meningitis are all examples of misdiagnoses when the person actually has Lyme disease. MTHFR gene mutations create a special environment in your body for toxins, disease and dysfunction to take over every cell in your body. Impaired methylation leads to a defective immune system, which is not what you need when you’re exposed to Borrelia burgdorferi and co-infections. So people with MTHFR issues may not all have Lyme disease, but if they aren’t functioning optimally, conditions are ripe for infection.
This post is not intended to be a comprehensive missive on Lyme disease and all its attributes, politics and health repercussions. What I want to do is make you aware of the disease and correct some common misconceptions so that if you have it, you can start your path to recovery. The symptoms of chronic Lyme and post-Lyme disease syndrome overlap with other illnesses so if you’re feeling really ill and can’t seem to get better, you might want to rule it out. Some insurance plans cover the better tests (and I’ll talk about those), but even if they don’t this is worth investigating. I’ve seen more than one person run in several different directions and spend money they didn’t have to (feeling sick and dysfunctional all the way) only to find out that what they have is actually Lyme disease. I know health care is expensive and unfortunately our insurance and medical systems are fractured at best. It stinks. But spending a few hundred dollars (even thousands) to get to your root cause and get it solved and out of your way so you can get back to your life is, to me, a non-negotiable if that is what it takes. And that goes for anything related to your health. Without health, forget about any money you might be saving. It’s useless to you.
Borrelia burgdorferi are the spirochetes that cause Lyme disease. A spirochete is a type of bacteria that is spiral shaped and can swim through viscous fluids. It leaves the blood and proceeds to assault the body’s tissues, especially those of the joints and nerves. It can also transform into a cyst form and set up house in the spinal fluid and brain. Then it proceeds to evade the immune system, protected, for example, by fibroblasts (connective tissue cells). When we deal with infections in our body, it’s not the actual infectious agents that cause us to feel so badly. It’s our body’s immune responses to these infections, in particular, inflammation. Symptoms of Lyme disease include stiffness, pain, twitching and palsy, unusual eyesight issues, tingling and numbness, night sweats, swollen glands, irritable bowel syndrome, heart palpitations and arthritis (a good symptom checklist is here).
Having MTHFR does not mean that you have Lyme. But as we know already, MTHFR mutations impair the immune system and slow down the detoxification process. People with improperly addressed MTHFR gene mutations often suffer from things like glutathione depletion, a dysfunctional immune system and an overload of heavy metals. It becomes impossible for them to properly kill and/or eliminate bacteria and other toxins. The systemic dysfunction makes it easier for the spirochetes to take hold of their bodies. While some people can take some antibiotics and get better quite quickly, many others go on to develop chronic Lyme disease and endure the debilitating symptoms that come along with it. Eventually this disease can be fatal.
And then when you think having Lyme is bad enough, you enter the maze of treatment. Despite being a pervasive global health concern, Lyme disease is often misdiagnosed, under-diagnosed and improperly treated. Your number one goal will be to find a good Lyme-literate medical doctor (LLMD). You need to do this before you begin your testing. Two labs are ahead of the pack right now in the work to eradicate false negatives: Advanced Labs and Fry Labs (the latter of which is the leader for co-infection and biofilm testing). Please visit the resources list at the end of this post to find a LLMD (and if you have Lyme, please help others by placing links to any resources I’ve missed in the comments section – but no doctor names, please!)
If Lyme isn’t your problem but the symptoms are still nagging at you, it could be another tick-borne illness. Toxic mold illness is also highly prevalent in people with this collection of symptoms and is often also present in Lyme patients, making treatment more complicated. I will be discussing toxic mold illness in an upcoming post. In the meantime I am leaving you with an excellent documentary, which is actually the first one I ever watched about Lyme and really altered my thinking about the disease. If you haven’t seen it, I highly recommend you watch it.
Resources
International Lyme and Associated Disease Society
Klinghardt Academy
Lyme Disease and Associated Disease: The Basics
Lyme Disease Association
Tick-Borne Disease Alliance
Tired of Lyme
Andrea Post author
The link appeared to be old. I have updated it so you can watch now. If you are still having problems, search for “Under Our Skin” on YouTube. There is also a sequel.
Tracey Nolan
Or as in my case hundreds of thousands. Because I test negative for Lyme since Lyme testing is inaccurate but have been shown the spirochete in my blood with a darkfield. The ILADs says Lyme is a “clinical diagnosis” yet here in America we rely on testing that we know is heavily flawed. It has also been proven antibiotics do not work for chronic Lyme.
wanda maltais
My daughter was diagnosed with Lyme in the panhandle area of Florida in 2008 and has been suffering ever since with various problems. We have finally found an LLMD in MS that is treating her but the antibiotic treatments don’t seem to be helping much. We know she has co-infections too. Bartonella for sure as well as others that are causing severe digestive issues as well as other more common symptoms. One doctor has already removed her Gall bladder for no reason since it was obviously not the problem and another was trying to remove her appendix too afterwards but we told them no! I started researching the Lyme connection several months ago because I have been convinced she has been having recurring bouts every year in the spring and fall since she was originally treated with IV antibiotics. I came across several articles dealing with MTHFR and I know for sure she has some form of this as do all three of my nieces and I suspect my mother that just passed away from Alzheimer’s did as well. I tell you all of this to ask a basic question about methylation and whether an LLMD should be aware of the problems associated with detoxification when it comes to someone with MTHFR. My daughter is only 24 and has been suffering for the past 7 years and we desperately need to find a cure. If it means we need to find another doctor… we will. She was just referred to Tulane Medical Center and has an appointment coming up in September. Just wondering if we should mention any of this information?
Andrea Post author
Hi Wanda – you may notice I moved your comment to this post, which is about how Lyme and MTHFR are related. Yes! You should definitely mention it as the mutations affect all aspects of detox, including organic toxins like Lyme and co. Good luck with your treatment!
Angie
I take issue with “new theories suggests transmission could take place through the placenta”. My family is living proof that this is more than a theory….it’s a fact. My twin boys were born with borreliosis (Lyme disease) from me because I didn’t know I had it until after they were born. I had an “old placenta” at 20-some weeks (meaning my placenta was more like that of a pregnant woman closer to 40 weeks) and no one could figure out why. Sadly now we know.
Andrea Post author
I’m so sorry to hear that, Angie. Thank you for sharing your story here.
Angie
No problem, I just want people to be aware that is true. Thank you for your other information you posted………from what I have learned so far, everything else you posted is accurate. If anyone reading this is planning on getting pregnant, even if you don’t have any symptoms of Lyme (I didn’t at the time), you still have NOTHING to lose and everything to gain by finding an LLMD and getting a Western blot test. (regular doctors misinterpret results like mine did………….I had Lyme all along but thanks to stupid bogus CDC guidelines, I was told it was a “negative” even though I had positive Lyme specific bands just not enough to make their ridiculous quota) I wish I had done that, then I would’ve been on antibiotics throughout my pregnancy and my boys would not have gotten Lyme. Hope this spares someone from going through what we are. God bless <3
Theresa Lee
I agree with most of your article. I got Lyme in 1974 at age 18. Was “blown off ” by scores do doctors. Undiagnosed 30 years. Fought hard with drugs, detox, etc. for 10 yrs. got “better” but at 58 I have now relapsed and am sicker than ever. I have spent my life studying this disease.
So, I have one comment regarding your statement: “But spending a few hundred dollars (even thousands) to get to your root cause and get it solved and out of your way so you can get back to your life is, to me, a non-negotiable if that is what it takes. ”
Try tens of thousands of dollars ! No insurance coverage. Everyone is out of pocket. Lyme disease ruins you financially, ruins your family life and is uncurable. If you are diagnosed QUICKLY (The spirochete scan burrow into your spinal fluid within 8 hours of infection. The spirochete can encapsulate itself in hostile environments within 15 minutes to avoid antibiotic assault. ) you stand a chance of a cure. But so many people are misdiagnosed or “blown off” that very few get prompt treatment.
So, I take issue with the “thousands of dollars” remark. It takes tens of thousands. It takes your life. Check out the recent survey done on the California Lyme association website.