Saturday, June 14, 2014

Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections

(Updated 5/13/20)

That's a pretty sweeping statement I made in the title to this post, isn't it? I certainly didn't start out with that point of view. I used to mentally roll my eyes at people who seemed to see Lyme disease everywhere they looked. But, over the years, I've met and heard from dozens and dozens and dozens of people who were originally diagnosed with ME/CFS and/or fibromyalgia who eventually (sometimes decades later) discovered they had Lyme disease and/or other tick-borne infections (either in addition to or instead of their first diagnosis). Lyme disease is a known trigger for ME/CFS, so plenty of us (including my son and I) have both.

I will provide details and links in the rest of this post, but here are the basic facts:
  • ME/CFS, FM, and Lyme are almost impossible for a patient to differentiate because they share so many similar symptoms. If you have joint pain, headaches, light sensitivity, severe brain fog, night sweats and/or any neurological symptoms, there is an even higher chance that you have one or more tick infections.
  • Most people with Lyme disease never noticed the tick bite - the ticks that transmit diseases are tiny, the size of the period at the end of this sentence. And only 40-50% of those with Lyme disease ever had the bulls-eye rash you hear about.
  • Studies DO show that Lyme is one of many known "triggering infections" that can cause ME/CFS to begin. Roughly 11% of those who get Lyme disease (just like mono and other triggers) go on to develop ME/CFS, whether their Lyme was treated or not. This means there are plenty of people who get both ME/CFS and Lyme (my son and I included).
  • THERE ARE NO ACCURATE, RELIABLE TESTS AVAILABLE FOR LYME DISEASE OR ANY OF THE OTHER TICK INFECTIONS. So, if you've been tested and the result was negative, that provides you with no useful information (though you can believe a positive result) - see details below.
  • Having Lyme disease is actually good news for many people with ME/CFS or FM because Lyme disease, though it can be difficult to treat, IS treatable. I have seen many cases where, once accurately diagnosed with Lyme and co-infections and treated, patients recovered either partially or fully and now live full, active lives, even holding down full-time jobs or going back to school full-time.
So, the details...

Tick Infections
We are no longer only dealing with Lyme disease (if we ever were). Ticks carry at least a dozen different infectious agents (often called Lyme co-infections) that can cause serious illness. Just getting a simple screening test for Lyme (as most doctors order) is not even close to enough. Other common tick infections include babesia, bartonella, ehrlichia,  mycoplasma, and Rocky Mountain Spotted Fever (there are others but these are the most common). One study in New Jersey that tested ticks themselves actually found MORE of them were infected with bartonella than with Lyme, but there are very few doctors who know anything about bartonella. This blog post I wrote a few years ago outlines the different tick infections and their primary symptoms (though I left out Rocky Mountain Spotted Fever, which is quite common).

We learned all of this the hard way. Our oldest son has had ME/CFS since 5th grade. In 7th grade, he got Lyme disease (for the second time), tested positive, and we treated it again, but this time he didn't recover fully. Although we had doubts, the doctor convinced us he had been fully treated, and we chalked his lingering symptoms up to ME/CFS. He gradually got worse and worse until he was finally diagnosed with Lyme, bartonella, and babesia in 10th grade, infections he'd probably had since that 7th grade tick bite. No one had ever tested him for co-infections, so his Lyme couldn't be fully eradicated. (Here's more information on our lightbulb moment when and how we realized he had bartonella).

"I Was Tested for Lyme, and It Was Negative"
If I had a penny for every time I've heard this statement, I'd be rich by now!  Here are just a few reasons why it doesn't matter that your test result was negative:
  • The most common screening tests for Lyme (Western blot and ELISA) look for antibodies to the Lyme bacteria in your blood. Not everyone makes antibodies--especially those with immune disorders like ME/CFS--and even if you do make them, they are not generally present until 6 weeks after infection.
  • Even more sensitive PCR tests which look for the actual Lyme bacteria are inaccurate because Lyme bacteria and the other infectious agents don't stay in the bloodstream - they hide in tissues and joints (hence, the characteristic joint pain). So, any and all blood tests are unreliable for detecting tick infections.
  • Therefore, if you get a positive result, you can believe it, but a negative test result for any of these infections provides no information.
  • One Lyme doctor explained to us that a blood PCR test generally finds Lyme when it is present about 65% of the time (not very good odds!). Spinal fluid tests are about the same, only with much greater risks involved in extracting the fluid, so stay away from those entirely. PCR testing done on fluid extracted from a swollen, painful joint is more accurate, but still comes up positive in only about 75% of the cases where infections are present.
So, it doesn't matter how many times you have been tested and had it come up negative--you could still have Lyme and you could certainly still have other tick infections. I have had relapsing-recurring Lyme disease for over 10 years and have never had a positive test, either PCR or antibody (I know it's Lyme because my symptoms go away with treatment).

If you want to know more about why testing isn't reliable, here is an excellent list of 27 Reasons Why Lyme Tests Are Unreliable that explains it all in more detail.

If the Tests Aren't Reliable, Then How Do You Know If You Have It?
The only reliable way to know for sure whether you have Lyme and/or other tick infections is to be fully evaluated by a Lyme expert. Commonly known as an LLMD (Lyme Literate MD), he or she will evaluate you based on: physical exam, history, pattern of symptoms, and results of the best tests available. They will send your blood samples to the best labs in the country and will test for ALL of the infections, not just Lyme. If any one test comes back positive, you know for sure you were bitten by an infected tick. Then, the LLMD can analyze your symptoms and history to help determine which infections you have. For instance, the tests for bartonella almost never come back positive (it hides even better than Lyme), but there are tell-tale symptoms, like bartonella "lines" on the skin (that look like stretch marks or scratch marks) or burning pain in the soles of the feet that only occur with bartonella.
NOTE: Besides LLMDs, there are also effective LLPA's (Physician's Assistants) and LLNP's (Nurse Practitioner). We are currently seeing a very knowledgeable and experienced LLNP.
Even the CDC admits that a Lyme diagnosis must be a clinical diagnosis (that is, diagnosed based on symptoms), so it's a mystery to me why so many doctors run one flawed screening test and then tell their patients they don't have Lyme.
Most regular doctors have barely even heard of the co-infections, let alone know what their unique symptoms are, so it is absolutely critical to see an LLMD. This website provides links for finding a local LLMD in your area or region (worldwide). Here's another searchable LLMD database. There are LLMDs all over the globe, though you may have to travel a bit (we drove 90 min to see our first one and now about 50 min to see our LLNP).

"My Doctor Says There Is No Lyme in My State/Country"
Even the CDC now admits that Lyme disease is rampant throughout the U.S. Last year, they issued a statement that their previous estimates of Lyme disease prevalence were probably off by a factor of 10, finally realizing and admitting that many cases of Lyme go unreported, and that the total annual number of cases in the U.S. is probably 300,000 or more.

Lyme disease exists in every U.S. state and on every continent except Antarctica. A recent study found Lyme bacteria preserved in amber dating back 15 million years ago!

Anywhere that there are deer and mice (critical parts of the tick's life cycle), there are infected ticks. In some places, other animals besides deer play that critical role in the ticks' life cycle. For instance, they now realize that the growing number of tick-borne infections in the UK are being helped along by the sheep population.

You can't rule out Lyme disease based on where you live. However, if you live in the Northeast U.S., the mid-Atlantic, the Midwest, or Europe, you have a higher than normal chance of getting tick infections. A recent article explained that the number of tick infections reported in California is also rapidly growing. Despite official statements that there is no Lyme disease in Australia, I know of at least a half dozen Australians who have been diagnosed and are getting better with treatment. Tick infections are everywhere!

"I Don't Spend Time in the Woods"
It's a common misconception that Lyme only happens to outdoor enthusiasts who spend days out in the woods. Many people--probably most--get Lyme disease and other tick infections right in their own yard. We see deer in our yard all the time, and we know there are mice around, too - that means infected ticks are present. 

One day last summer, I spent 30 minutes weeding our flower bed. I was sitting on our paved driveway on a towel, reaching into the bed, and I'd sprayed insect repellent on my legs. Later, I went inside to take a shower and found a tick attached to my scalp! Another time, I was again sitting and weeding (only way I can manage any weeding), only right in a bed of pine needles. That time, I found tons of tiny dots on my inner thighs. My poor husband had to pick 80 tiny ticks out of my rear, thighs, and ahem, other areas with tweezers. Those were the nymphs - the ones the size of a period at the end of a sentence - the ones that most often carry diseases.

This week, we were eating dinner when my son looked at me and screamed! There was a tick crawling up my neck. I didn't even go outside to get this one - it came into our house on a package that had been delivered to our front door. I thought I'd gotten rid of it earlier, but apparently not.

Lyme Disease is Often Misdiagnosed As Other Illnesses and Can Cause Mental Illness
Lyme disease is called the Great Pretender and with good reason. It is often misdiagnosed as ME/CFS or fibromyalgia (the joint pain makes this mistake especially common). Doctors also often mistake it for various forms of arthritis (it actually does cause arthritis if left untreated), MS, and even Parkinson's disease. Those last two might surprise you, but long-term Lyme causes neurological damage, so its effects can easily be mistaken for neurological diseases - you can't even tell the effects of MS and Lyme apart on a brain scan.

Lyme disease can even be misdiagnosed as various mental illnesses. Even more surprising, right? But again, Lyme causes neurological damage and can trigger depression, bipolar disorder, and even schizophrenia, as evidenced in this scientific paper, this study, and this case study.

Lyme disease even causes Orthostatic Intolerance (OI) and viral reactivation, just like ME/CFS does.

Some of the common symptoms of tick infections that can also occur in ME/CFS and fibromyalgia include joint pain, headaches, nausea, light sensitivity, severe brain fog, night sweats and/or any neurological symptoms. If you have any of these symptoms, then it is even more urgent that you be evaluated by a Lyme specialist for all of the tick infections as soon as possible.

How Can I Prevent Lyme Disease?
If you've been thoroughly evaluated by an LLMD and are certain you do not have Lyme or other tick infections, then you will definitely want to keep from getting it in the future. My family doctor always reminds me that just because I have ME/CFS doesn't mean I can't get something else! She wants me to always come in to check out any new or changed symptoms, and that is great advice. In fact, I DID get Lyme disease 5 years into my ME/CFS. I knew I had it because I had sudden onset of knee pain, where I'd never had joint pain with ME/CFS before, and nausea (another common Lyme symptom), and all of my "normal" ME/CFS symptoms were much worse. Unfortunately, that's the way other conditions often present when you have ME/CFS--your regular symptoms just get worse. Every test I had for Lyme over the next 3 years came back negative, but my symptoms showed I had it. My Lyme symptoms went away with treatment (both prescription and herbal), though they tend to pop back up every few years, probably due to my immune dysfunction. I am currently treating Lyme again and this time trying some new remedies (herbals) to try to get at the infection that is hiding out in my joints and tissues and re-emerging.

So, if you do go outside, even just into your own yard, you want to prevent tick bites:
  • Always wear insect repellent, preferably one that contains DEET. You need a repellent that repels ticks as well as mosquitos. This Consumer Reports article shows how to protect yourself and which repellents they tested were effective against ticks. Though most contain DEET, they did find one "natural" repellent that worked against ticks...but most others do not. If you are concerned about DEET, wash it off when you come back inside. 
  • Wear light colored clothes and tuck long pants into socks. Ticks generally catch a ride starting down near the ground and then crawl up your body, so you want to be able to keep them out and see them if they are on you. If I am walking through grass or woods, I often spray just my legs and around my feet and ankles.
  • Do a thorough tick-check when you come inside. Remember that the ticks that cause infections are tiny, the size of a poppy seed. When I got all those tiny ones on me, at first, I thought the one I saw was just a freckle! You want to check your skin carefully after being outdoors. This really works - we have found many ticks this way. They like close, warm, dark places, so check especially carefully under your arms, in the crooks of knees and elbows, in the groin area, and on the scalp (use a fine-toothed comb or feel carefully with your fingertips).
For more information on Lyme disease and other tick-borne infections, here are some reliable sources:


Beatrice Desper said...

Thanks, Sue. I'm going to look for a specialist in France.

Sue Jackson said...

Good for you, Beatrice - it really makes sense for anyone with ME/CFS to at least look into tick infections. Check those links I included in the post for finding a doctor - I think they may include some international resources?

I am hearing from some of my European friends that Lyme is definitely getting more attention there finally.

Good luck -


Valerie said...

Hi Sue,
This is such a great post! I saw your link on Donna Gran'ts post that she created this week about Lyme. I have also had a CFS/ME diagnosis before my own Lyme diagnosis. I am so thankful that I got tested as now I have permanent heart damage due to Lyme that was left untreated. I hate to think what it would be like if I had just left it and never known!

Sue Jackson said...

Thanks, Valerie. So sorry to hear what happened to you - glad you did get diagnosed before things got any worse. That's why I am constantly urging people to consider tick infections & get evaluated! Stories like ours are all too familiar.

Thanks for taking the time to share your story.


Unknown said...

Hello Beatrice,

Did you manage to find a specialist in France? i would be very interested to get into touch if this was the case. Thank you in advance.


Anonymous said...

Sue, is it possible that your recurring Lyme is in fact re-infection given you have so many ticks on your property? It’s something I’ve wondered about on my own property and I keep returning to the thought that perhaps we should move.

Sue Jackson said...

Anon -

Well, that is what I thought the second time it recurred, but by the 3rd time ... I realized it just never left my system, and both Lyme specialists I have seen agreed. Which is the way Lyme works! The basic spiral-shaped bacteria (spirochetes) bury themselves into tissues and joints (hence the difficulty in catching them in the bloodstream and in treating via the bloodstream with abx), but they also convert over time into two other harder-to-reach forms: round or cyst form and biofilms. Both make it even harder for treatments to reach the bacteria - this stuff knows how to protect itself!

It's actually quite common for tick infections, including Lyme to stick around for years or decades, because of these characteristics - and especially in cases like my son and I where we have dysfunctional immune systems that don't fight off bacteria effectively.

All of this is why early detection, diagnosis, and treatment are so critical. But many people are like us - we just continue treating to keep the infections "controlled" within our bodies - almost impossible to eradicate by this time but we can keep them controlled well enough to prevent symptoms.