Ever since CFS Unravelled was published, I have been contacted by people diagnosed with Chronic Lyme Disease wondering if they have really have Lyme Disease or Fibromyalgia Syndrome and Chronic Fatigue Syndrome.
Lyme disease is an infectious disease caused by at least 3 species of bacteria and usually results from a tick bite, although people are not always aware of the bites. Many but not all people develop a bull’s-eye rash around the bite site.
The illness is usually treated with antibiotics, but in some cases people develop chronic Lyme disease, although much of the medical fraternity does not recognise this condition. If that last sentence isn’t enough to spark the interest of people with ME/CFS and Fibromyalgia Syndrome, the list of symptoms will certainly start to sound familiar.
And so it is no surprise that they are often diagnosed with ME/CFS and Fibromyalgia, sometimes before their Lyme diagnosis, sometimes after.
But listening to stories of people that have recovered and people that haven’t, my view on the subject has strengthened over the years, because I keep hearing the same experiences told in different ways.
Because I didn’t want to “open a can of worms”, I have held back in speaking on the subject for some time, despite a wonderful interview I had with Katina Makris, author of Out Of The Woods.
Read more...
But recently I had my own brush with a tick bite. After a day in the bush, I found a tag at the back of my head. Without thinking about it, I had grabbed it when suddenly I felt extreme pain spreading on my head.
Sure enough, I had the first tick bite of my life. And whilst normally removing them leaves you with nothing to worry about, I had of course triggered the tick to empty its contents deep into my scalp, causing an immediate and somewhat severe reaction.
Now I won’t bore you with the details, but I took appropriate precautions to treat the infection which in the coming weeks spread symptoms across my scalp, down my neck and caused my glands to go into overdrive.
But I figured, this must be a signal for me to finally share my views on the subject of Lyme disease, or more poignantly, CHRONIC Lyme Disease!
But before I do, so that we don’t have anyone upset due to a misconception, let me start by stating the obvious:
LYME DISEASE IS REAL.
Yes, the illness isn’t easy to diagnose, with many false positives and false negatives (some labs have been reported to have up to 70% error rates), but the bacterial infection is of course absolutely real.
And regardless of whether you have the characteristic bull’s eye rash or not, I have no problem believing that many people have Lyme disease and that much of their illness, their symptoms, result from this infection.
But here is my point.
Is the Lyme disease actually WHY you are sick?
“Well, of course”, you might say. And yes, there is no doubt whatsoever that Lyme disease can create terrible symptoms when the infection spreads, especially when it becomes chronic.
But WHY is it such a problem? Why does it become CHRONIC in some people?
Many people get tick bites, and they don’t get sick.
Many people get tick bites, get Lyme disease, and recover quickly.
Ask yourself, “Why would Lyme disease become CHRONIC in some people?”
What is REALLY the problem here?
Is it that we were infected with Lyme disease, or is it that we are not recovering from it? I would suggest, the real problem is the latter.
You see, I hear these stories all the time. Sometimes it’s Lyme disease, sometimes it’s glandular fever, sometimes it’s flu – the list goes on and on.
Not only do I hear about many of these infections triggering ME/CFS/Fibro, but I actually believe that these infections often thrive only because ME/CFS/Fibro is being experienced.
That is why I inevitably hear of so many people with chronic Lyme that have the same personal histories that we always see with ME/CFS/Fibro. And it is no surprise that we also see the same similar stories of recovery. Katina Makris’ story of recovery is a prime example of this.
Don’t get me wrong. I am not saying that Lyme disease is ME/CFS/Fibro. Some people get SEVERE Lyme disease and get SEVERE treatments that work and from which they consequently recover to regain their health.
But so often, Lyme disease becomes part of the wider experience of ME/CFS/Fibromyalgia which is why we then need to adopt a holistic approach that encompasses the root cause of ME/CFS/Fibromyalgia, as well as addressing the Lyme infection with treatments that are most relevant.
But so many people get a diagnosis of Lyme and feel this relief, that they finally understand WHY they are sick and they just need to treat the Lyme and all will be well, only to find that is not really the case. Because of course, CHRONIC Lyme can be notoriously difficult to treat, just like ME/CFS/Fibro – the connection seems clear – it is rooted in the immune dysfunction.
There are many infections this world throws at us, many of which history has shown even to be lethal, even in the masses. The question I always ask, WHY do some people survive and thrive and others not?
The answer inevitably has to do with health as opposed to disease! Whilst eastern medicine has long recognised this, the difference between health and disease is something which many people in the west unfortunately still don’t seem to understand (frankly I was one of them until I learned what I shared in CFS Unravelled). But change is happening and modern medicine is evolving and integrative medicine is changing how we treat many illnesses.
My view is this – CHRONIC Lyme disease is a result of poor immune dysfunction, often part of ME/CFS/Fibromyalgia. Hence it is a consequence of illness more than a cause of it. Yes, it causes much dysfunction and symptoms and needs to be addressed, but as a consequence of ME/CFS/Fibromyalgia. Like I always say “treat the cause, not just the consequences”.
What do you think? What is your experience of recovery from Chronic Lyme Disease?
I’m not sure I completely understand your conclusion or that I would use the same phrasing. But, I think I am pretty much on the same page here. I am VERY holistic and eschew labels unless necessary, so I don’t see CFS, FMS, MCS, EHS, Lyme Disease, etc. as separate “diseases.” So I don’t know about calling Lyme a “consequence” of the other labels. But I think you probably agree with my belief that all of these labels represent the same, or very similar, pathology, that might have variations in their initial triggers and some other minor variations that don’t… Read more »
Hi Jen – thank you for you excellent comment. The point about it being a consequence is this – Lyme isn’t a problem when you contract it, because you just recvoer from it. Lyme is only a problem when you DON’T recover from it. The reason I am suggesting why some people don’t recover from it, is because of ME/CFS/FMS. That’s why I see CHRONIC Lyme a result of ME/CFS/FMS. Normal Lyme of course is a consequence of a tick bite! Can I just say Jen, that you get it. Your viewpoint and attitude are actually what I am suggesting… Read more »
Wow, it’s all very clear to me now. ME/CFS/FMS triggered my chronic lyme. That must have been the case with my classmates from grade school who developed chronic lyme! It MUST have been their ME/CFS/FMS which they didn’t have at the time causing autonomic dysfunction, which in turn, of course, caused immune dysfunction, which in turn, then and only then, lead to chronic lyme! Wow, I’m glad to have that cleared up. Seriously…….how foolish is all of this. At the end of the day, Okkham’s Razor : A ten year old is living normally. They get bitten by a tick.… Read more »
Wow that’s harsh. Your frustration makes, it’s tough being ill and the idea that ‘ME/CFS/FMS triggered my chronic lyme’ is pretty ridiculous isn’t it! So, I can’t really disagree with your viewpoint because essentially I agree with you. Indeed it is the infection that causes Lyme and indeed this leads to low immune function just as you describe. Many people get appropriate treatment for the infection and then recover, which is great. Unfortunately, some people don’t recover despite all the antibiotics in the world – the question is why? What’s even stranger is that some people recover from chronic lyme… Read more »
‘It’s clearly a complicated topic’. Of course it is. Reducing the topic of discussion then to reason that certain people get chronic Lyme while others don’t to ME/CFS as being the root cause is a childish oversimplification, and doesn’t even make logical sense. There are no biomarkers for ME/CFS because it a heterogeneous label. Certain people are suffering from neurological issues. Certain people are suffering from immune mediated issues. Certain people are suffering from mitochondrial mediated issues. Certain people are suffering from a combination of the 3. It is up to the patient to determine where they fall on the… Read more »
I am benefitting from it! I have been in the new age movement for 10 years trying to find solutions to my problems in all the wrong places. I have done it all: yoga, mindfulness, Kundalini, dissociating, meditating, Joe Dispenza, Theta healing, NLP, trauma healing, therapy, supplements and clean eating. Result: 10 years lost. 10 years half lived because of a severely compromised immune system, debiliating fatigue, chronic infections and worsening neurological problems which are now maybe permanent :(. I strongly suspect MTFHR because vitamin B issues (with hospitalization) run in the family. I also have re-activated EBV, severe CFS… Read more »
I think that you are right and that many more people are exposed to the Lyme disease organism than ever develop the disease but I also think that once it gets a foothold it alters the immune system so much that simply trying to rebuild the immune system is unlikely to bring it under control. I think the best take on Lyme is Stephen Harrod Buhner’s Healing Lyme and Healing Lyme Coinfections. His opinion is that we need to restore health AND knock down the infectious organisms which are often multiple, and that this is possible and often preferably done… Read more »
Hi George – well I agree with the multi-lateral appoach to healing, but would be mindful about beliefs about the immune systme not being able to tackle this. Obviously, it isn’t likely to suddenly turn around without action, the key is to have an action plan like I describe in CFS Unravelled. But it’s also KEY to focus on the root mechanism, not just trying to heal the body. Because unless the root mechanism is corrected, the immune dysfunction and other problems simply won’t resolve long term. Thank you very much for your comment!
Great post Dan, I love that you are discussing this issue. I myself was diagnosed with chronic Lyme disease about 8 months into my illness, based on one of these specialty tests that are not covered by insurance. That ended up being a terrible distraction as multiple courses of antibiotics, each stronger than the last, left my digestive system a complete mess and I ended up getting much worse than before treatment. I believe “Lyme literate” doctors are doing their best to address the needs of very sick people. However, these tests they talk about have certain rates of both… Read more »
Thanks Jay – the Lyme aspect makes the whole ME/CFS/FMS story even more complex. And besides the whole misdiagnosis issue, where people shoud really focus on their true illness, some people will actually have Lyme (diagnosed or not).
But how this is treated needs to be so carefully considered, as some treatments can do more harm than good.
In the end, like so many other infections and dysfunctions, it can be a real distraction as you put, keeping people from focussing on the root cause!
I’ve been in the Lyme world for 6 years now (as a patient) and have heard a lot of stories. There are people with Lyme who weren’t sick before the tick bite, some people were actually thriving and quite healthy, including young athletes, health nuts, and children. Once the bacteria enter your body, they tinker with your immune system so as to remain undetected by it. They do their stealth damage over a period of years, and by the time people actually have symptoms, they’re in multi-systemic metabolic mayhem and it’s hard to come back from that. People have different… Read more »
Thank you for your comments Denise and sharing your experience! 🙂
I agree completely Denise. If your root cause is Lyme you need medical interventions that treat the infection. Lyme Disease can be terminal when not treated so this is an important point! In addition to being a serious bacterial infection that spreads throughout your body many studies are indicating it can be sexually transmitted and passed from mother to child. People can employ neuroplasticity techniques and should employ a range of other holistic treatment strategies but they must be first treated using herbal antimicrobials or antibiotics. I would encourage all people suffering with CFS to be tested for Lyme as… Read more »
Hi Sarah, Indeed Lyme is a serious infection and it is important to get treatment. However, whilst Lyme responds reasonably well, it has been my observation that treatments of people with ‘chronic’ Lyme do not respond so well to Lyme treatments. Reason being in my view, that they have CFS. And so I feel that people need to treat both CFS and Lyme IF that is what they have. I don’t believe your statement about 90% of people with CFS having Lyme to be accurate, but I am open to any literature that you have which supports this. Given that… Read more »
Hey Dan,
Thanks for the reply, and I respect your opinion too :). Il send you a private message with some links. Its not scientifically confirmed through clinical studies its just what many Lyme/CFS doctors are publically and privately saying (including my own doctor) based on results they are finding with the CFS patients they tests for Lyme and treat for Lyme etc .(When I say Lyme I also includes the Lyme co-infections like Babesia, Bartonella, Rickettesia and parasites ).
Thanks for sharing really interesting insights on this website and I really enjoyed reading your book Take care 🙂
Similar to what some others have already said: it’s probable that Lyme and neuroimmune disregulation propagate and amplify each other. On the bright side, many protocols address both (e.g. LDN, dietary changes, light exercise, capsaicin and turmeric). Other protocols might address one but aggravate the other (e.g. prolonged antibiotic treatment). People’s budgets and patience also vary greatly. What a tangled knot it is!
Hi Sean – well, you are talking about primarily physical treatments, but a nervous system dysfunction in my view is best addressed directly. That’s what you see with stroke victims and so on, they don’t take pills, they retrain the brain! Hopefully the explanation videos vs will make sense to you.
Er they do take pills. Stoke patients must get medication fast or they die or become severely disabled. They explained that to me at a stroke unit. A combination of pills depending on stroke type. Some short term and some long term. A stroke patient may also need a thrombectomy. Medicines can include aspirin, antiplatelets & anti coagulants like warfarin. So stroke patients do take a number of pills and have rehabilitation on top. The sooner they catch a stroke and medicate is what changes prognosis, not brain retraining. Some people are left permanently disabled… not because they weren’t good… Read more »
Oh goodness.
Well of course the physical injury has to be treated with medication and perhaps even surgery in an emergency setting.
I thought it was clear that I am talking about long after the event when such treatments are no longer required.
So what you say is absolutely correct, I wasn’t saying something to the contrary.
I wasn’t putting out misinformation, I was simply talking about the physical neurological rehabilitation of stroke victims, not patients currently experience stroke.
Have not read all the comments but just thought to say that this reminds me of comments made by Judy Mikowitz in a radio interview I listened to recently, I believe she said something on the lines of when Chronic Lyme sets in it is virtually indistinguishable from ME/CFS and the pathology is then virtually the same. Well something like that anyway. She is well worth listening to ! Also really I would say, how many people with CFS do not also have Fybro, where do you draw the line, just unexplained pain on all fronts, with a slightly different… Read more »
Hi Patricia – thanks for your comment. I don’t have the figures on people with CFS without Fibro, the whole distinction doesn’t make much sense to me. It’s the same illness and more and more Doctors are seeing that now as they experience the commonalities – the pain is really just another symptom! In other words, I am not sure I would bother drawing the line, except that if the patient feels the pain is a problem, then it should be addressed as part of the recovery program (after medical investigatiosn to rule out anything else)!
Having attended a Lyme disease conference, and online summit, I was shocked that these top Lyme doctors say it is as much as 90% of CFS people have Lyme. I thought I was going to be one of the 10% but I’m not and I’m doing treatment. So that’ll be a lot of people who are none the wiser because people trust their mainstream doctor who isn’t getting them well. I’m sure these top Lyme doctors don’t get it right all the time either. But with a blood sample sent to somewhere like Immunosciences or Igenix you stand a chance… Read more »
great explanation here Dan, I had been wonderng myself about the overlap
Whilst I normally feel it is always helpful to learn more about what is going one, the fact that such a diagnosis oftne distracts people from the root problem at hand and that the diagnosis is often questionable, makes the whole Lyme issue very unhelpful!
Hi , I’ve been seriously ill for 4 years following a holiday to the USA where I had lots of insect bites ( I used to live there , in the same area ,and both my parents contracted Lyme when they visited me whilst I lived there ). My parents were both treated at uk hospitals as they had classic Bulls eye rashes and recovered fully. I didn’t have a rash and the onset of the illness was delayed. None of the U.K. tests have detected Lyme in my body and all the nhs consultants that I’ve seen don’t believe… Read more »
Hi Ruth, It sure is a rough trip with the illness, and unfortunately diagnostic criteria can be quite narrow, which given that all these illnesses are actually just 1 in my view, makes little sense. The brain training you have benefitted from makes total sense to me, but we need to recognise that this central sensitisation is secondary. And hence the primary root dysfunction, the dysautonomia also needs to be resolved in order to have a lasting recovery in my view. So I think you are on the right track! Childhood trauma can absolutely play a role, and has been… Read more »
I have been trying to work out whether I have chronic Lyme or M.E. I became ill 18 years ago after visiting Florida and have become increasingly more ill since with no treatment except thyroid support. My symptoms get a lot worse around full and new moon when the Lyme bacteria are meant to reproduce, which leads me to think I have Lyme disease. The symptoms are very similar in both conditions.
Hello Rachel,
It’s important to be thoroughly investigated regarding the reasons for the illness and not to self-diagnose, because many illness produce many of the symptoms of ME/CFS/FMS.
Not sure if I managed to convey my views well enough for you in this article – basically I am saying that Lyme disease is something that you get treated with and recover over a reasonable period of time, ‘chronic’ Lyme is lyme with ME/CFS/FMS.
Thank you Dan. I have had tests to rule out some causes but unfortunately cannot afford to test for Lyme and co-infections so self diagnosis and treatment is my best hope. My symptoms are that of chronic Lyme.
I was always prone to being bit by biting insects. When they said it was ME/CFS they diagnosed without obligation of doing a Lyme disease blood test. So you are lulled into a false sense of security that the NHS is through in their diagnosis of exclusion. Whereas they just did a handful of basic blood tests, sent me to a psychiatrist and a cardiologist. So clearly they weren’t looking in the right places. When I had a persistent annaul decline they were happy to call it atypical fibromyalgia and prescribe antiinflammatory and give me a TENS machine and I… Read more »
Hi Fiona, Well, it sure gets complicated quickly doesn’t it. Yes, I understand where you come from when you say ” I don’t see how a bit of relaxation or being empowered alone treats underlying immune endocrine and infectious disease components”, it’s hard to argue with that if you have any real world experience! Positive thinking for ME/CFS & Fibromyalgia sure is helpful (as it is for any challenge in life), but we need to really affect neurplasticity to normalise immune and endocrine function. It’s about normalising autonomic function, so that the immune system can overcome infections and normalise our… Read more »
What type of doctor treats ME/CFS due to chronic Lyme? Can you recommend someone in NYC? I did antibiotic treatment. I’m better but totally listless most days, for most of the day.
Hi Sonia – it’s my view that it is chronic lyme is due to ME/CFS – not the other way around – the subtlety can be important for recovery!. I cannot recommend a Dr in NYC, but recommend that you seek an integrative MD to help you along. It is my view that along with the physical treatment, that brain training to address the root mechanism perpetuating the illness is also very important. You might like to check out the ANS REWIRE intro videos to understand how this works in more detail.
I have chronic lyme 22 years, 3 co infections trying natural remedies. It’s 10:40 am here been asleep twice…so what do I do to cure CFS? from what I read there is no cure for it or fibro, got that one…L had the bulls eye in the hollow of my neck and do have neurological lyme
Hi Sarah,
Having Lyme certainly complicates recovery from CFS, not least of which due to the stubborn infection and symptoms it causes.
Indeed there is no ‘cure’ from CFS, however, people do recover through a process that is tailored and by addressing the root mechanism of the illness rather than only treating symptoms. In my view, we need to both treat the root cause as well as secondary dysfunctions and infections.
thank you I almost cried 🙂 that there is actual hope. I have heard all of this but never in such detail. Thank you again and I will be getting your book
Hi Sarah,
Glad you feel uplifted.
Because there isn’t a ‘silver bullet cure’ for ME/CFS/Fibromyalgia and chronic Lyme, people often think that means it’s permanent, which of course is an experience that many people have and resign themselves to.
But yes, recovery is definitely possible for chronic Lyme also, and I have seen people do so with and without the use of anti-biotics.
reading yout book now.I’ve heard/read the why’s now I know cause…can’t wait to finish reading 🙂
After a year of issues and symptoms, this is the one I drew the line with. I had been diagnosed with several different things over several months, but with chronic fatigue and multiple myalgias listed as well. The last discovery was lyme. Testing initially came back indeterminate, followed by a positive response to testing on a particular strain. My doctors debated between themselves about whether this was a true confirmation of lyme or not. The suggestion was to add antibiotics into the mix of other treatments. With some stomach issues starting to resolve, I couldn’t bear the idea of throwing… Read more »
Thanks for your comment Carrie.
The key in my view, is to get a proper diagnosis of Lyme, and if it is present to treat it effectively with the right antibiotics under the guidance of an expert. I guess most people would wonder, did the anti-biotics work for you, did symptoms reduce and did you have a follow up tests that confirmed the LYme infection was gone?
I elected not to take the antibiotics. Alongside my symptoms I had a mildly elevated white blood count. It was speculated that Lyme might be a contributing factor. However, the symptoms didn’t all align with lyme. I reviewed what medications I had taken with my Dr. after the onset of symptoms and they included antibiotics for something else, but we’re a version of antibiotics that were appropriate for Lyme. While I did have improvement for the immediate concern for which I had taken the antibiotics, I did not have improvement related to the broader symptoms. I did, however, have increasing… Read more »
Thanks for sharing your experience Carrie. 🙂
I got ill 11 years ago, I use to walk a lot in Sussex , but I have tried to find out where to get a blood test , I know it’s called western blot ,I don’t mind paying but there there is no info available even on Lyme disease website ..I wanted to do this and an amalgam test for elimination purposes.
i think it’s all of the above . Some will eliminate symptoms if they are fortunate enough to kill all the bacterial infections transmitted by the tick. If abx or herbals are used I’d say you will be in the minority if Lyme has spread it will be very hard to eradicate bc you don’t know which bug is causing your symptoms or is still hiding out in tissues. To eradicate completely you need biofilm busters even more than abx. But even if symptoms are largely resolved I agree that this went chronic bc the body already had been impaired.… Read more »
I believe chronic Lyme exists as even after the bacteria has been treated, symptoms then persist. The question is, is this down to poor immune function? The reason some recover and others do not is down to immunosuppresion in my opinion.Many contract Lyme and do not become sick, strong immune function. If Lyme isn’t treated then the symptoms mimic other diseases such as M.E and Fibro, although I believe Fibro can be caused by Lyme too. I was misdiagnosed back in 2000, the jigsaw pieces were not joined from bite,rash, palsy and heart problems. I have been treated for Lyme… Read more »
I appreciate your comments.
I have Chronic Lime and even ME/CFS. My fibromyalgia is better now. I gett Lime 20 yers ago, then fibromyalgia and then ME/CFS. I think like you, there is a link between this illnesses. I am sure there is! My Lime was not treatad correctly and then i gett this othet illnesses too.
Hi Rikka,
Indeed there is a link, ME/CFS and Fibromyalgia have the same root cause.
Glad you found the connection with Lyme article helpful.
I pretty much agree, especially since some of the bugs that people get from tick bites are good at suppressing the immune system. I also think for a lot of people the reason that they develop chronic lyme is that they don’t get adequate or appropriate treatment while it’s still in the acute stage.
I got Lyme disease in 1996, seemed to recover for a few weeks (with what I now know was a far too short & low dose course of antibiotics). Over the years I got short relapses which my immune system seemed to get on top of by itself. A few years later I got really bad, with persistent fatigue, and my GP gave me a course of IV antibiotics, which again helped me achieve to be completely symptom free a bit later. Over time I relapsed again, and having moved to the UK had no access to a further course… Read more »