A series of recent articles have laid bare the Lyme disease problem in the U.S with startling clarity. Given the disease’s remarkable spread in forty years (it was identified in Connecticut in the 1970’s), many people with mysterious fatigue and pain problems have a stake in getting this disease handled. That means reliable diagnostic tests (including those that differentiate it from ME/CFS and FM) and treatments that work.
How many people, after all, with ME/CFS/FM/Lyme wonder which disease they have? (How many are afraid to get tested for Lyme because of the testing problems?).
The U.S. medical system isn’t close to getting either providing reliable diagnoses or treatments. Remarkably enough, it’s hardly even trying meaning that it’s mostly washed its hands of possibly millions of suffering patients. It’s getting plenty of push back, though, and it’s possible some changes will be occurring. .
Unsettled Science
Maya Dusenbery and Julie Rehmeyer’s “The Science Isn’t Settled on Chronic Lyme” is all too reminiscent of the struggle that chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have been through. The blog focuses on a disease – Post-treatment Lyme Disease Syndrome (PTLDS) – which is locked in the same struggle for recognition and funding that ME/CFS and FM are, except that in many ways it’s worse. Whatever researchers are saying about ME/CFS/FM in private, at least major medical groups aren’t publicly saying that ME/CFS and FM isn’t real.
Dusenberry and Rehmeyer assert that gender bias is partly behind the paltry funding for Lyme disease
Post-treatment Lyme Disease Syndrome (PTLDS) occurs when the patient remains ill with symptoms similar to those found in ME/CFS and FM even after standard treatment. The problem starts with the massive amount of grey area found in Lyme disease itself. Noting that current Lyme tests can’t reliably diagnose anyone with Lyme disease, Dusenberry and Rehmeyer wonder how anyone can even remotely say anything with certainty about chronic Lyme disease.
Yet they do. Despite a CDC report which acknowledged that post-treatment Lyme disease syndrome or PTLDS exists and is prevalent, Dusenberry and Rehmeyer noted that “the Infectious Disease Society of America, or IDSA, has repeatedly and flatly claimed that the whole notion of chronic Lyme is “not based on scientific fact.” Simon Wessely couldn’t have said it better:
Skeptics argue that the array of symptoms PTLDS patients experience—muscle and joint pain, fatigue, cognitive problems—are so subjective and nonspecific that they may have nothing to do with Lyme disease. Sufferers’ true problem might be psychiatric—depression or “maladaptive belief systems“ or “a tendency to somatization.” Or patients may be overselling how bad it is: In its 2006 guidelines, IDSA stated, “In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne coinfection.”
The ugliness reaches a peak not seen in the ME/CFS and FM fields in decades when two Lyme experts openly state that because more women have PTLDS, it must have a psychological origin.
Along the way, Dusenberry and Rehmeyer provide the best short explanation of the staggering problems with Lyme testing that I’ve ever seen. Disturbingly, they point out signs indicating that the bacteria can survive antibiotics and that the current testing regimen misses more women than men, and they strike back against the skeptics and deniers of PTLDS in the best way possible – with hard science.
What this disease and the people who have it clearly need are not more invectives but more funding. (One interesting hypothesis that just popped up, though, proposes that PTLDS patients’ immune systems are attacking the glycolytic enzymes in their neurons. That’s not far at all from the energy production hypotheses floating around ME/CFS).
The authors end with a plea for the medical community to roll up its sleeves and get to work.
That means that ironically, those who howl that chronic Lyme is “fake” BECAUSE SCIENCE aren’t just being unscientific, they’re also impeding science. On top of that, they are attacking extremely vulnerable patients and feeding sexist stereotypes. So cut the contempt. Let’s do the science and figure this disease out.
Read “The Science Isn’t Settled on Chronic Lyme“.
The Ticks Are Winning
The Scientific American’s June 2018 article, “In the Battle against Lyme Disease, the Ticks Are Winning“, cites many of the same arguments as the Slate piece as it deplores the “false image” of an easily diagnosed and treatable disease perpetrated by health officials. Researchers cited being turned down for grants because Lyme was a “middle-class disease,” or, because it “isn’t that much of a problem.”
The Scientific American article claims that the happy face the CDC and others have put on Lyme disease testing and diagnosis is unwarranted
The article notes that CDC’s own figures suggest that 300,000 people contract Lyme disease every year. The disease is found in over half the counties in the U.S. (and is continuing to spread). Despite the $4 billion it’s expected to cost the U.S. economy, the NIH devotes a paltry $22 million a year to it.
Whether because of agency intransigence (CDC), sexism, a bad rep. or just a bad start, Lyme disease is the Rodney Dangerfield of insect-borne diseases. In 2015, the NIH spent $16 per case of Lyme and $16,000 per case of West Nile Virus. It’s yet another major neglected disease hiding in plain sight.
Yet Lyme is just part of the problem. Ian Lipkin and others have demonstrated that ticks can carry other pathogens, few of which are getting much attention. Konstance Knox’s data suggests that some people diagnosed with “chronic Lyme disease” have a tick-borne Powassan Virus infection. She’s currently studying the incidence of insect vector borne pathogens such as Lyme disease, Powassan virus and others in Dr. Peterson’s ME/CFS patients.
Read “In the Battle against Lyme Disease, the Ticks Are Winning“.
Congress Gets Into the Act
Again and again, we’ve seen the NIH and CDC unwilling to address clear funding disparities in diseases and conditions unless pushed to do so. It’s remarkable, though, to see the two agencies spending so little money on such a clear and present danger as Lyme disease.
Having apparently tired of sending the NIH and CDC directives to do more on Lyme disease that get ignored, Congress has lately given its NIH directives more teeth. Amongst the dozen Lyme directives included in 2018 Appropriations bill to improve Lyme surveillance, prevention, diagnosis, etc. is an order to have the CDC justify its crummy spending on Lyme disease using burden of disease figures (Disability Adjusted Life Years (DALYs). Plus, the agency is going to have to provide estimates of economic costs (medical costs, indirect medical costs, non-medical costs, and productivity losses) imposed by the illness. That report is expected to demonstrate “the glaring disparity” between the resources the CDC commits to Lyme disease compared to other insect-borne illnesses.
Now that congressional oversight has been strengthened, thanks in large part to efforts by stakeholder organizations, excuses for noncompliance will no longer work. Bruce Fries, President, Patient Centered Care Advocacy Group
Time will tell whether funding will increase but the CDC’s and NIH’s feet are finally being held to the fire.
Read “Congress Acts to Improve CDC and NIH Lyme Disease Programs”.
Sadly it does not help those suffering with symptoms of PTLDS to insist that chronic infection is the cause. Whilst the syndrome obviously exists there is NO doubt that it is NOT due to persistent infection, but rather a post-infection problem.
Those who cling bitterly to the idea it is a chronic infection are the mis-named “Lyme literate” who have created a veritable industry out of inventing ‘treatments’ for these unfortunates for which there is NO evidence at all – and all at staggering cost.
Some of these individuals recommend over 100 different persistent treatments with no basis in reality.
It is not helpful to rubbish science – it is the only method capable of getting to the bottom of the problem. The process may be slow and frustrating – but it is a lot better than the smash and grab money making schemes of the snake oil brethren who are bleeding people dry with useless and onerous schemes.
I think your comment exhibits perfectly the situation we’re in: not enough hard research to give confidence as to what’s going on and what treatments are best. I thought the Slate article covered the treatment issue rather well.
What if Chronic Lyme disease is really not Lyme disease? What if we are chasing something that doesn’t exist? What if we are just toxic and we have these symptoms due to immune disregulation and neurological damage? What if we need something to chase like a microbe in order to feel like we are addressing the problem? “Lyme” is such a complex illness that it really isn’t a tick bite, just like CFS isn’t really just a viral issue. It is complex and to say it’s caused by a tick bite from years and years past is just ignorance. Let’s figure out how to restore our immune systems that were damaged by all the toxic insults we have thrown at the body that can’t cope anymore.
“Discovering on how Rob Matthies and Will Wiegman Ph.D. cure themselves in their bout to fight Lyme disease is a better alternative than go on class action lawsuit against CDC. Get to know of them by checking this link.
https://issuu.com/bernatorresedith/docs/audit__report_ishwa-1“
While persistent infection can happen and does happen and is not accurately recognized due to the endless debate of persistent versus post infection I have to agree.
We have to start looking at the immunological mechanisms of the disease process, come up with treatment strategies and find new ways to determine if the infection is killed by creating new testing.
The nano trap urine testing, the quantification of bb membrane proteins in human serum, already suggested by the NIH back in 1990’s, metabolimics and new laboratory techniques, investing in the t cell technique, already tried in the late 80’s by Dattwyler…
I mean, with a little money, an open mind and good science we can tackle that problem in 10-15 years and give patients back quality of life.
Frank, how is it, “NO doubt that it is NOT due to persistent infection,” when the science shows that the bacteria are stealthy and have survival defense that can take them through simple antibiotic treatments. The science actually disputes your claim. “Lyme literate” doctor knows this and that’s why they continue to treat it with multi antibiotics along with medicines to treat side effects from the bacteria until the bacteria is eradicated. What your claiming is post-infection problem is either a reinfection (that can happen) or the initial bacteria was not eradicated and emerged out of it’s stealth phase. Yes, there are a lot of snake oil treatments out there praying on those patients that can’t find a lyme literate doctor and our stuck with doctors that don’t know the science above and refuse to treat their lyme leaving them with no alternative.
https://www.nature.com/articles/s41598-020-59600-4
Please read this latest research findings on Lyme disease by researchers at Stanford University.
There is wayyyyy to many parasites, protozoa, mold, fungus that can and does invade the body that science has not acknowledged. Those of us whose immune systems don’t recognize and attack or once it recognizes and destroys continues the attack. Latest study showing that those with or who had Lyme can react to beef as its protein can create an allergic reaponse. https://relay.nationalgeographic.com/proxy/distribution/public/amp/2017/06/tick-bite-meat-allergy-spreading-spd
That particular immune system detects it as an invader and goes into defense and attack mode. Turning on its own proteins and attacking self. This doesn’t happen to everyone and only those with wonky immune dysfunction. Setting up chronic inflammatory results. May be why my going vegan initially helped. (Have since added back some fish and meat. But also eliminating a lot of vegetables that have lectins and was causing more inflammation.) Treating Lyme and Coinfections and mold and fungus is my best help to date. For sure, it’s making huge differences for me.
Issie
Sadly I’m sure this is true. Dr. Bateman on her recent talk with Ron Davis said one of the things our medical system does not do well is fund pathogen research.
Thank you for reporting on this. There are so many overlaps with Lyme and M/E and I think bridging the Gap could only be helpful for patients, research etc
I’ve started to think that, if ME/CFS is something like the “metabolic trap” suggested by Robert Phair in his work with Ron Davis at the OMF, then many initial infections or injuries may be paths to developing the illness. If so, then the Lyme vs ME/CFS question may not be an either/or issue, as borellia infection may be one of the more common pathways to causing ME/CFS.
If true, then this raises the further question of whether eradicating the bacteria is sufficient to treat the illness once it has become chronic. Eradication of the infection has already been shown to be difficult by the growing number of studies showing persistence of borellia after what should be effective courses of antibiotics (studies the naysayers brush off by postulating that just because you still find bacteria in a treated animal or patient doesn’t mean it’s causing illness—even if that patient still has the same symptoms as before treatment!).
One thing I don’t think you mention in your article is that a major part of the controversy in Lyme is not so much whether PTLDS exists but rather whether the post-treatment symptoms are caused by persistent infection (the ILADS position) or lingering damage caused by the past infection (post-treatment Lyme disease syndrome). The IDSA point of view is that repeated or long courses of antibiotics are not warranted because the infection is undoubtedly gone and they call the condition PTLDS.
I suspect, given the research to date, that both are true: the infection can require lengthy and aggressive antibiotic therapy to drive out the infection, and yet even that may not be sufficient if the patient has developed ME/CFS. Therefore, even if my illness started with Lyme (and in my particular case, Bartonella), while I try to kill off any remaining pathogens, and continue my IVIG to support my immune system which was damaged by this illness, I watch with bated breath while this new crop of stellar researchers apply themselves to solving the mystery of ME/CFS!
Thank you, Cort, for another fine article!
Very interesting insights Vlynx! I hope that the last is not true – that the pathogen is both there and it has initiated a process which has taken on a life of its own.
Another area where a disease, condition or syndrome or whatever you call it affects a lot of people, causes a lot of distress, is of concern to many yet it is poorly funded. It would be fascinating to search out the different reasons this has happened.
NIH funding for Lyme disease is actually down about 10% from five years ago.
My 2 cent theory on why women may be over-represented with PTLDS – our hormones.
I contracted Lyme in 1993 (even had the bull’s eye rash). Antibiotics got rid of all my symptoms – severe fatigue, joint pain, brain fog. A few months later however all symptoms returned. It’s possible I was bit again since I lived with my dog in an area rampant with Lyme, but the test (western blot) was negative. Still, antibiotics got rid of all the symptoms a second time. Finally, the symptoms returned a 3rd time and this time a month’s worth of antibiotics did nothing and since I had another negative lyme test, my doctor concluded I had ME/CFS. This was 1994.
I struggled with fatigue, brain fog and arthritis for the next 20 years but was able to have some improvement with better diet, graduated exercise, and meditation.
But, here’s the kicker. At menopause, in 2014, I was suddenly flattened all over again with severe fatigue and brain fog as bad as when I first got sick!
I got tested again – this time from Igenex but it was inconclusive for b. borrelia and negative for all lyme coinfections. Still my doc tried me on 2 antibiotics which I quit after about 5+1/2 months since there was no improvement.
(Since my cortisol was low, I’ve been on a small amount of oral cortisol which has helped with energy though the side effects suck.)
I’ve read about Lyme surviving in body protected by biofilms. I have no idea if that’s what’s happened in my case. I don’t know why Ignenex didn’t find it. But it just seems my Lyme/hormonal cocktail is the culprit for my symptoms and complete loss of quality of life.
I hope these NIH/CDC directives help but I fear it will be a long time before they figure anything out.
If anyone has any encouraging feedback, please share. Thanks!
Most importantly – thank you, thank you, thank you Cort for bringing such important info and all your hard work!
My doc told me there are pathogens that we may have to learn to co-exist with. We may have them for life and it’s a matter of management. They can be from mosquitoes and not just ticks. He also feels we can pass them on in pregnancy and if the child immune system accepts them as “normal”, then they are born with and have to co- exist from birth. No wonder illnesses knows no age. We may be born with these issues. There is also debate if they could be passed on with sex.
True Lyme morphs into. Different forms and can lie dormant for perfect circumstances to morph into a form that will cause havoc.
Issie
Thanks Kira. I wish I had something useful to add. All I can think is here is the hormone issue rearing its head again. I wonder if we will get to the answer for ME/CFS without figuring that one out.
Thanks Cort. I was having a bad day when I wrote in and it is sooo healing sometimes to know someone as busy as yourself read and took an interest. Thanks again.
https://rawlsmd.com/health-articles/just-how-reliable-are-lyme-disease-lab-tests
I just got this book. I like hus approach and way of looking at things. We may have microbes that are not detected – yet we are just as sick.
Issie
Thanks. To that I will add a couple of books that Dusenberry and Rehmeyer referred to in their Slate article. The Lyme literature is apparently becoming a pretty rich one.
Porochista Khakpour’s new memoir, Sick, describes her experience of decades of severe illness from chronic Lyme disease.
Lyme: The First Epidemic of Climate Change
Conquering Lyme Disease: Science Bridges the Great Divide
Cure Unknown: Inside the Lyme Epidemic
I have been told by a naturopath who healed herself of fibromyalgia to “heal your gut”. If the gut is the problem in FMS/CFS/ME, perhaps the huge antibiotic doses given to people with Lyme disease are tipping them into FMS/CFS/ME? It seems to me something that would warrant research.
That is indeed the big and rather horrifying question.
Antibiotics seemed to help me at first. But then it did mess my gut up. I didn’t get to the level I am until I used herbs and changed my diet. Enzymes have been a huge factor for me. It not only could help the gut, but they have found they break down biofilm and then the immune system can get to what is in that biofilm. I’ve even gotten rid of tumors with this and others are shrinking. We have a biopsy showing a known mold that can cause tumors as part of my problem. Addressing fungals has made improvement for me. Not to mention my blood flow is better because with less biofilm and thinner blood, things are greatly improved.
Issie
Hi Issie,
What enzymes are you taking and how do you take them? I’ve got my papain for protein breakdown but I’d like to explore more.
That biofilm you talk about, is that in the gut or digestive track? If not (like in veins or around organs) do you think these enzymes pass trough the gut lining into the blood stream?
Thanks,
dejurgen
Issie – what herbs were helpful to you for which symptoms? Thanks.
Private message me and I will answer these questions.
Issie
One will take the Antibodies to your Grave this is all this so-called Lyme is, it is not any Cause of ME/CFS Fibro EDS & same goes for all the Mold which it has nothing to do with this illness but countless Groups convinced it is involved & it is not at all…Then they say it is Chronic when their snake oil treatments fail & the Lyme Literate MD Quacks diagnose them…Hilarious bunch…I have not heard anyone saying or proving that the Cause of ME/CFS Fibro EDS has been found, have you?
EDS is genetic. Only form not yet connected genetically is Hypermobile EDS. They have refined criteria for EDS and few will fall into that catagory. There is now a lesser/different type that more will fall into – Hypermobile Syndrome. They aren’t calling that syndrome EDS. But, it’s still listed with EDS typing.
Issie
I’m stuck between a rock & a hard place with tick diseases. If I stop antibiotics & antivirals (it took a trio of different kinds) I relapse. I’m trying to switch to just herbs, have always done herbs too, but even strong cooked brews don’t seem to be enough. I suspect I may have created superbugs with all the antibiotics. And of course now my gut is ruined. What to do? I’m more functional with all the treatment but still stuck in the limbo of chronic illness. I do wonder if I’d done just strong herbs at the beginning I might be better off, but I was so sick back then that I needed someone to just tell me what to do. It took a while to learn about herbs, and they certainly take more effort and expense. I’d like to try a rife machine, if I win the lottery, hahaha. Has anyone here tried rife?
please, please, people, go to The Medical Medium (www.themedicaledium.com) for explanations of all diseases that affect mankind. This information comes straight from Spirit. Research cannot identify the REAL causes of these diseases. Help yourselves and listen to what the MM says about them. For example, Lyme disease and ME are only 2 of the illnesses caused by the Epstein Barr virus. T’he EBV has over 60 strains none of which are known to researchers yet. These strains of EBV hide in different organs and cannot be found in the blood. It costs nothing to get informed and it can change your life. The cures are REALLY SIMPLE so if you want to get well, go to this website.
Hopefully the science won’t be unsettled too much longer.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6023324/