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.
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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 necessarily require different therapies. Because I was already improving so much with the Gupta Programme by the time I started receiving disability benefits (and thus could possibly pay for doctors), I have actually decided to NOT get evaluated for Lyme because I didn’t want that to distract me from my healing or to make me doubt my belief in healing myself. It’s bad enough that I have to deal with all the scientific evidence out there about what toxic mold does to the body. That was my ultimate downfall, and I can add PTSD to the list after that experience. I don’t need another label to confuse matters. I also haven’t done genetic testing for detoxification ability or extensive heavy metal testing. I would like to have more information once I can rewire my amygdala/limbic system back to health, but I just don’t want to get sidetracked. (My other “labels,” in chronological order, are/were CFS, FMS, toxic encephalopathy, MCS, EHS, and every other sensitivity imaginable… just for sake of background info. MCS is by far my most debilitating problem that I identify most closely with, and I have met many “Lymies” in my MCS support groups over the year, and they often believe that their illness is less treatable than those who have different initiating triggers. I don’t want to put any more doubt into my head.)
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 people need to take on board! And exactly as you suggest, the additional Lyme issue can just confuse matters. Having said that, those people that do have severe CHRONIC Lyme, can of course benefit from some specific treatments including intravenus antibiotics as well as herbal treatments, but their CORE strategy should still be the same as for all people with ME/CFS/FMS. And of course, pursuing those other treatments can be challenging given the extra angst it can create (getting side tracked as you put it).
You don’t need any doubt in your head – sounds to me like you are on the right track! Thanks for your comment! 🙂
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.
They don’t treat.
Chronic immune dysfunction ensues.
You don’t have to be terribly bright to understand that the immune/nervous system dysfunction that follows the tick bite is a result of a chronic infection. The Borrelia microbe is a stealth infection that evades the immune response and is by nature immunosuppressive (re : ospA and the other fungal antigens on the bacteria). Get a life Dan Nerfball. Stop taking people’s money who have a chronic infection and downstream physical dysfunctions. Once they are better physically, then we can address any remaining neurological issues with a good laugh and some brain retraining. How illogical is all of this ‘ANS dysfunction’ nonsense being the root cause of chronic lyme? Is this a joke? A : unfortunately, not for Dan!
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 without anti-biotics and perhaps strangest of all, some people recover their health and still test positive for Lyme (can it get any more confusing?)
Sorry the post didn’t resonate with you, I think the nuance of the message hasn’t come through clearly enough, I apologise for that, it’s clearly a complicated topic.
‘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 spectrum with the research severely lacking to enact differential diagnosis. It is is irresponsible for you to say that ANS dysfunction is at the root of all ME/CFS when that is clearly not the case based on people’s symptoms alone. I would estimate that is true for ~20% of true CFS patients with post-exertional malaise being the hallmark symptom.
In my opinion, a major contributing factor developing chronic Lyme is detoxification impairment (re : MFHTR, and other haplotype variations that are responsible for clearing external antigen). I cannot prove this, but it is something time and time again in this population; people with chronic Lyme overwhelmingly respond with tremendous improvement in symptoms when enacting a detoxification protocol. This has nothing to do with ‘brain plasticity’. I tend toward the Russian approach to health : health starts in the body, not the mind. It’s interesting that a lot of brain disorders are in recent years being tied to toxicity issues. We can meditate all we want; at the end of the day, toxicity and impaired methylation are physical issues that need addressing.
I hope that someone reading this will benefit from it and not fall down the rabbit hole of believing that their symptoms are all neurological. For most people, they aren’t. For people who suffered some sort of severe trauma who came down with ME/CFS, their issues tend to have a neurological underpinning in my experience.
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 and…. suspected chronic lyme. All I can say is: had I only listened to my body before. Please please listen to your body, everyone, especially women… we have that innate wisdom, that preserves, protects and nurtures LIFE. If something is wrong, find your inner wisdom and an expert, that supports you in your healing journey.
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 with specific herbs.
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 false positives and false negatives. A Lyme doctor views any negative result as a false negative, while any positive that they manage to get out of any test is said to indicate that you have the organism in your body. This process necessarily results in many people who do not have an active infection, or may not even have been exposed to the spirochete, being told that Lyme disease is the cause of their illness. I was one of these people. Since I am now getting closer every day to making a full recovery based on your insights and the tools in the Gupta program, I can hardly complain. But it pains me to see people being distracted by false hopes and ideas about their illness, and being given the harmful belief that they are being attacked by something beyond their control.
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 reactions to tick bites because, for one, not all ticks are infected, not even in the same area. There’s a nature preserve near where I live where 1 in 4 ticks have been found to carry borrelia. So if you’re out with 3 friends and you all get tick bites, only one of you might end up with Lyme. Some people say, “I’ve been bitten by ticks before and I’ve never been sick!” Well, maybe it’s not due to their stellar immunity, maybe they just got lucky and the ticks that bit them weren’t super-infested.
Also, ticks carry a different mix of pathogens. For example, one tick might carry borrelia and bartonella, but another tick might carry borrelia, bartonella, babesia, *and* mycoplasma. The person who gets bitten by the tick with the greater number of pathogens might have more difficulty overcoming his or her infection and that could be a reason why some people recover and some people don’t.
Also, some people have trouble detoxing due to their genetics or other factors, which makes an infection more challenging to overcome, but that doesn’t mean they had ME/CFS *before* the Lyme infection.
Overall, I agree that chronic Lyme is definitely partly rooted in immune dysfunction, but immune dysfunction as a *result* of the nature of the borrelia spirochete (it masterminds your immune system, this is a well-known fact among Lyme researchers and doctors). I agree that sometimes there’s immune dysfunction prior to getting sick with Lyme, but this isn’t always the case.
(I’m an 80% recovered Lymie using herbs, ozone, rife, supplements, detox, and other holistic treatments. Four years on antibiotics helped, but didn’t bring me all the way back.)
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 many doctors are saying as much as 90% of their CFS patients have Lyme. Yes, testing is not always accurate in that there are false negatives but according to the top Lyme doctors false positives are extremely rare. If your Lyme test is positive you have Lyme Disease.
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 many people with CFS get their health back without treating Lyme disease, if the 90% statistic were correct, then it would seem that people could recover more easily even without Lyme treatments.
In any case Sarah, I hope you find your journey to recovery. Really appreciate your point about a multi-lateral approach and treating infections where possible rather than just relying on brain training. 🙂
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 at brain retraining, but medication came too late. Brain retraining helps a lot but only where the medication made it possible. The biggest factor of recovery in stroke is catching it fast so the medication prevents brain damage. You probably shouldn’t put out misinformation so you can use it to sell your courses.
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 emphasis sometimes.
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 of understanding what is going on. Plus people don’t just have Lyme. They have any random combination of coinfections. I think one person could have Lyme and bartonella, the next lyme and ehrlichia, the next two strains of Lyme and so on.
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 I have Lyme because of my negative bloods. I’ve been given a diagnosis of atypical ME and have been working this last year with an OT at a specialist fatigue clinic to try and help recovery . I make tiny steps forward and then lots back. The reason they think it’s atypical ME is because I have extremely bad cognitive fatigue / sensory overload and central pain . I don’t have sensitivity to pressure or myalgia in my muscles as I understand fibro patients have. My skin never feels normal it progresses from numb to pins and needles to a chemical severe burning on my scalp and limbs and I can’t always feel temperature in my skin either . Weve been trying to reteach my brain to stop the constant negative feedback of centrally mediated inappropriate pain by using ice / skin brushing / different textures and kind of thinking and telling my brain what the feeling is. It’s definitely reduced the intensity such that I’m not tied to bed anymore but then if I stop doing the daily repeated therapy it starts to increase. I’ve been kicking against a diagnosis of ME for years but finally decided two days ago to start looking at it and try to understand it if it isn’t chronic Lyme . I’ve spent so much time money and energy researching and taking treatments for Lyme. So I discovered your free book on Amazon and had a read and watched the videos on this site. I am thinking that maybe my traumatic childhood and Other stress I’ve had might have something to do with this life destroying nightmare of an illness that I’m stuck in. Maybe I need to address the higher ans dysfunction if that’s indeed what I have rather than just trying to deal with symptom suppression. I’m feeling slightly hopeful … Thanks.
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 shown to affect many physiological and psychological aspects of the illness. It’s about ‘lifting all the anchors’ as I describe in CFS Unravelled – AT ONCE!
Hope your insights will be reflected in progress with your recovery soon! 🙂
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 was also at the wheelchair clinic all without further tests.
It turned out that the secondary form of hypothyroidism was the problem where no amount of give it more time on levothyroxine would have done the trick. I have a long story with this and know taking liothyronine was a thing that really helped me. A key area of misdiagnosis for me as hypothyroidism adrenal fatigue was half my problem. So I have a 5 year story about that.
To regulate the immune system I’m on low dose naltrexone LDN which helps certain symptoms the thyroid medication doesn’t. So this is a further step in the right direction.
As I got established on LDN I had the opportunity to do an experimental antibiotics protocol for 6 weeks for protomyxzoa parasite. It cured the deep ache in my legs. It got me wondering whether there was further help I needed.
More recently I’ve sought the truth behind the infectious disease side of things for myself. Back in the day I thought is it Lyme or thyroid that I should investigate, and it hadn’t occurred to me that both would be relevant topics to me!
I’ve been treated for 3 active viruses: EBV HERPES 6 & Coxsaclie which soon showed some improvement in functioning. Then I found I had mycoplasma pneumoniae and I’m treating with doxycycline.
I’m also building up herbal drops for Lyme disease. And B. Afzeli. I take samento banderol stevia BurBur and pinella.
I’d say to anybody to investigate it for yourself and get more specialist tests. It is expensive. It is important not to self diagnose. You don’t know whether others think you have Lyme or hypothyroidism because they have it themselves. All these medications supplements and herbs are due to medical advice not me randomly self diagnosing or thinking I may have Lyme disease so I’ll give it a go. In fact things looked the opposite at one point. There was a point when I thought I had Lyme but thought no it is a viral problem not Lyme. But further testing turned out to be both. Therefore I’ve had various infections heaped up like a pile of dirty laundry. Ignoring it, it got bigger. Now I have direction whereas I felt in a rut before.
I’ve had a rough couple of weeks where it brought out symptoms I was prone to and felt more ill and joint pain. But no doubt better times are ahead.
I’ve done EFT NLP and buteyko breathing in the past. Done my share of mindfulness and meditation classes. Pacing and rest. Been inspired by positive thinking memes and gemstone bracelets. All this has a place but I don’t see how a bit of relaxation or being empowered alone treats underlying immune endocrine and infectious disease components that were keeping me ill. I also think everything I’ve tried is for a reason and in the right order and everybody I’ve met, be it practitioner, somebody who suffers an illness be it in person or online is all for a reason and at the right time. People cross your paths for a reason and cm show kindness if you trust them and let them in.
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 homeostasis. But brain training alone isn’t always enough here, because it is difficult for the brain to normalise in the face of so many physical stressors (ie. infections etc etc.) That is why a multi-lateral approach is required!
You might appreciate watching the ANS REWIRE intro series where I explain this in more detail.
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 some antibiotics in the mix and potentially making that worse when I had no known tick bite, no rash I recollected at any point, and no illness directly associated with that. What I did have pervasively despite all of the other goings on was this fatigue, after which I started to get ill with any manner of things more frequently. I tend to agree that, at least in my circumstance, the ‘real’ issue was probably not the lyme, even if the testing was an indicator of it. That set me toward trying to understand what could connect all of these illnesses/issues I had together, which ultimately led me to this page.
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 gut dysfunction at that time. As a result of reviewing this prior
course of treatment, I elected instead to try to boost my immune system. In the interim I met with my gyn., and requested a scan, which uncovered a dermoid cyst on my ovary, which was causing hormonal imbalances due to dysregulated ovulation. This is now believed to be a precipitating physical factor in my fatigue, and my white blood cell count has reduced following it’s removal. My fatigue is still not resolved but it is improving and I am using the ANS Rewire. My point is this: if I had treated Lyme as the root cause and tried to treat that as the direct cause, I might still not know about the growth, and even then, just treating the physical precipitating factor is likely not be enough for wellness. As other blood work has started to normalize, I suspect the Lyme will as well, but I will retest in the future just to assure it is something I do not still need to address directly.
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. In my case I did have mild to moderate cfs/fibro symptoms prior to Lyme that I ignored bc Drs minimized them. I know I do not have persistent infections (it’s a unique and unusual story as to why) but it showed that there was way more going on than infections. And above. All these additional dysfunctions sits the ANS so hopeful this will be the answer for me.
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 twice, I’m 2015 and this summer, but am still very unwell. 18 years of a long time.
Neurologists dispute chronic Lyme exists. Untreated Lyme that becomes a chronic condition then? Whichever or whatever name, it is a very poorly understood ‘chronic’ condition.
I agree the cause has to be treated but the recent updated NICE guidelines fall short for patients whom have been ill forany years. 3wks of amoxicillin @3g daily is simply a drop in the ocean in my opinion. I know, I went through it this August. I herxed as I did on Doxycycline back in 2015 yet am still suffering.
I would like to feel I will recover, this isn’t living, it is existing coping with relentless severe pain,fatigue and neuroogical problems.
I don’t agree that chronic Lyme is a result of M.E/Fibro rather the other way around.
Katina
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 of IV antibiotics, so I left it far too long and by the time I had another course 4 years later was really really ill & unable to work (had dementia type symptoms, couldn’t remember how to change gear while driving, filled dry cat food into washing machine dispenser etc..). That time IV antibiotics gave me the usual worsening of symptoms, but I did not recover that time, but did still improve very slowly over time, and about 6 months later was able to take a part-time job again. By now, almost 25 years later, I have long periods of being completely symptom-free and relapsing again. So far a course of antibiotics (few weeks max) has always worked, so I assume I still have a stealth infection which triggers it all, but I agree that by now a lot of my immune system and neural pathways etc do not react in the way they would in a healthy person anymore. My latest relapse seems to have been triggered by long-term insomnia (which again I am not sure is not linked to my condition in the first place..) which again has weakened my immune system as I had continuous colds all year before I relapsed again.. Vaccinations have also triggered a relapse in the past (esp the Hep B one).. but yes, overall I guess the immune system going wrong is at the heart of all of it, just triggered and sustained by different issues in different people. Yet cytokine and epigenetics studies all seem to be able to distinguish (post treatment) Lyme patients from the rest of the ME/CFS patient group, so maybe treatment overall still needs to tackle different aspects.