7 ms·

The Challenge of “Chronic Lyme” (2018)

72 points by hprotagonist 5y ago

overthemoon 5y ago
For what it's worth, my wife has ~something~. She hasn't gotten a consistent diagnosis--Fibromyalgia, etc. She tested positive for Lyme at some point. All we know is that she's sore and tired all the time and has mysterious allergic reactions to things, all the things that get chucked into the garbage can of vague diagnoses around which swarm cranks, grifters, and quacks. I appreciated the sensitivity and nuance of this article.
- nsndndnnb 5y ago
  Has she seen a neurologist? My wife has MS and your description -- minus the positive Lyme test -- reminds me of the period of unexplainable symptoms that eventually led up to seeing a neurologist and getting an MRI and lo and behold lesions on the brain and spine that explained everything
- bobmichael 5y ago
  Has your wife considered that her symptoms are PPD (https://ppdassociation.org/diagnosis https://ppdassociation.org/diagnosis), i.e. have a psychological cause which can be unconscious? I had been suffering from unspecific aches, extreme tiredness, insomnia, sore throats, and other non-specific symptoms for the past 8 months. I had to take months of medical leave and went through 10+ doctors, accumulating negative tests and inconsistent diagnoses as I went along. Then, despairing, I read The Mindbody Prescription by Dr. Sarno and realized that my symptoms were due to repressed unconscious emotions. Since starting a free online recovery program a couple of months ago, I've gotten 80% better and I'm planning to resume work in a couple of weeks. I know this sounds just like more quackery, but I promise you it isn't. There's more and more peer-reviewed research supporting the theory behind PPD, and the track record of long-term recovered patients speaks for itself. Feel free to email me at me [at] bobmichael [dot] io if you or your wife would like to chat more about this.
  - thewebcount 5y ago
    As a counterpoint, my wife also has a ~~something~~ diagnosis. She's been dealing with it for 10+ years now. She eventually went through 2 or 3 of these types of recovery programs and they did nothing for her. Some of them were even sort of gaslighting, saying that it was all psychological, when it very clearly isn't. I don't want to diminish what anyone else has gone through, just be sure that you're prepared for yet another treatment to not work if you try something like this. I hope that it does work for those who try it, but it may not, and that can be even more frustrating to someone who has been told by doctor after doctor that "it's all in their head." She tried fixing whatever's in her head, and that also didn't work.
- AuryGlenz 5y ago
  ~something~ is one of the worst diagnoses to have. I had a bad concussion when I was 12 and ever since (I’m 33 now) I’ve had issues. Fatigue is the big one, but I also lost 2 inches of height, my feet shrunk two sizes, and my hands are as small as my mom’s. I’m male. There are other possible symptoms too, like cold hands and feet and too much heat/sunlight making me worthless for the next day or so. As I’m sure you know it can be hard to know which symptoms to group together. Are my cluster headaches related? Who knows. The only actual treatable aspect of this that they’ve found is my testosterone being too low. Supplementing that helps significantly, but it’s not enough. I personally think my growth hormone levels might be off, but my GP doesn’t know how to run the test for that and endocrinologists are the worst. I’ve been to Mayo quite a few times. The last time I was there the best guess they had for the testosterone problem was that my body thought it was dying, so it was diverting resources. I know that we don’t know everything and sometimes you’re out of luck, but it’s still frustrating nonetheless. It’s even worse when they can’t find anything physiological to test for. Before I asked to have my testosterone levels checked they just threw me on antidepressants and called it good. The only thing I was depressed about was being so damned tired all the time.
  - nradov 5y ago
    Is your GP unable to order these tests, or are they contraindicated in your case? https://www.labcorp.com/resource/growth-hormone-stimulation https://www.labcorp.com/resource/growth-hormone-stimulation Loss of height is common in the elderly due to cartilage loss but is rare among younger people. Have you had any spinal imaging done? And have you had your bone density checked?
    - AuryGlenz 5y ago
      He wasn’t able to as their clinic simply doesn’t run any of those tests. I didn’t pursue it further as life/trying to have a baby got in the way, but at some point I’ll pick it back up for my own health if nothing else No spinal imaging done but I did have a bone density test done, though I was told it was more to get a baseline for the future. Oddly enough the trans movement has given me a clue. Apparently MtF trans people can have height loss and, if I remember correctly, hand and foot size loss. It could simply be that my testosterone level was low enough to cause that, perhaps because it happened smack dab in the middle of puberty. When I was first tested my levels definitely weren’t trans-level, but that was about 10 years after the accident so maybe my levels were even lower for a while. It’d be nice to know for sure though.
- Arete314159 5y ago
  If memory serves, some diseases can trigger something called Mast Cell Activation, which in effect...makes your body get allergic reactions to tons of things. I HIGHLY recommend that, if it's in your budget, she make an appointment at the Center for Complex Diseases. They specialize in these sorts of issues. They are also really good at finding potential tick-borne coinfections such as Babesia and Bartonella. These are tricky to culture and they know which labs are best. I believe they are doing tele-health during Covid. https://www.centerforcomplexdiseases.com/ https://www.centerforcomplexdiseases.com/ Note that the CCD is Not Cheap. While you can get insurance reimbursement for some of the doctor visits, it won't cover the whole thing. But I spent 10 years going to 'regular' doctors and I made more progress with them in 5 months than I did in the previous 5 years of medical appointments.
  - Arete314159 5y ago
    I mention co-infections because the treatment for Lyme (doxycycline) is not as effective with some coinfections. Like I think the treatment for Babesia is clindamycin + some form of quinine. It's a parasite that infects red blood cells, kind of like malaria. So one possibly out of many is your wife could have been treated successfully for Lyme, but still have an underlying active co-infection. That's why seeing the right doctors is so important.
    - thewebcount 5y ago
      Yeah, my spouse has something like this, and tracing it back, we realized that it all started when she went off a long-term doxycycline treatment for adult acne. We've been trying to get a doctor to get her a new prescription, but many have been cagey because it's an antibiotic and they don't want to have her develop an antibiotic-resistant strain of some other disease in the process. Honestly, I can't imagine it would be any worse than 10 years of a deteriorating life where she can no longer work, or do anymore physical exercise than casually walking 1/4 of a mile. (She was previously a professional dancer, so you can imagine the psychological toll this has had.)
- drc500free 5y ago
  FWIW, a ~something~ that includes severe fatigue and allergic reactions sounds a lot like MCAS + Dysautonomia.
yasp 5y ago
https://archive.is/8fID0 https://archive.is/8fID0
hprotagonist 5y ago
huh, my archive.org link got stripped. https://web.archive.org/web/20180725163428/https://www.nybooks.com/daily/2018/07/25/the-challenge-of-chronic-lyme/ https://web.archive.org/web/20180725163428/https://www.nyboo... is the relevant snapshot. To me, this is a great piece that discusses, at length, the balancing act that clinicians have to perform when dealing with idiopathic conditions. It seems clear that lyme isn't the cause of "chronic lyme", but then, how do you compassionately handle people who are clearly suffering, while also not reinforcing a false belief, dangerous treatments, etc.?
- m0llusk 5y ago
  It is not really clear that "lyme isn't the cause of chronic lyme". Borrelia bacteria are the prime suspects and are extremely tricky spirochetes to deal with. There are multiple variants and they migrate around the body traveling easily through most tissues. There are dozens of symptoms that may exhibit at any part of the body. So there could be many factors involved, but Borrelia really are complex and capable enough to potentially explain everything. The real question is how to deal with such an infection.
clydethefrog 5y ago
I can recommend the book Bitten by Kris Newby for another theory why it might not be in the interest of everyone to classify chronic Lyme as a disease. Especially for people who loved the reports about the lab leaks in China last year. https://www.krisnewby.com/about-the-book https://www.krisnewby.com/about-the-book
- computer23 5y ago
  Kris Newby produced the propaganda documentary Under Our Skin and her conspiracy theories about "bioweapons" are nonsensical on their face: https://sciencebasedmedicine.org/a-review-of-under-our-skin-a-cult-classic/ https://sciencebasedmedicine.org/a-review-of-under-our-skin-... https://theconversation.com/no-lyme-disease-is-not-an-escaped-military-bioweapon-despite-what-conspiracy-theorists-say-120879 https://theconversation.com/no-lyme-disease-is-not-an-escape...
wyager 5y ago
The current state of diagnostics is pretty shameful. For all that proponents of modern medical institutions like to use the phrase “evidence-based”, there is very little evidence used in much of modern diagnostics. Run a few scans and tests, nothing shows up, pick from a grab-bag of vague, underspecified, and unfalsifiable disorders. There is so much guesswork and speculation. It’s only in the last 3-4 years that we’ve actually started using genetic testing for CSF diagnostics, and this isn’t even widely used! https://nextgendiagnostics.ucsf.edu/ https://nextgendiagnostics.ucsf.edu/
- nradov 5y ago
  It takes many years of painstaking research to build up the body of knowledge necessary for evidence-based medicine to become effective. This isn't shameful, it's just how the process works.
  - wyager 5y ago
    Doctors habitually indicate confidence levels incommensurate with available evidence. Doctors say “it’s fibromyalgia” instead of “I don’t know”, which is neither evidence-based nor “how the process works”.
PragmaticPulp 5y ago
When it comes to anything “Chronic Lyme” — be careful. There are two distinct worlds in Chronic Lyme research: One world involves researchers looking for the cause of very real symptoms that can persist in some Lyme disease patients even after treatment. This could come from some damage done by the infection, a lingering autoimmune response triggered by Lyme disease, or some other unknown lasting state that occurs after the disease in some patients. This is commonly known as “Post Treatment Lyme Disease” syndrome and it isn’t as controversial as some of these articles make it sound. The other world is an alternative medicine faction that has misused Lyme Disease as a catch-all label for unexplained chronic symptoms. They leverage the non-specific list of Lyme disease symptoms and some of the unknowns about the disease to convince desperate patients that Lyme is an explanation for all of the difficult problems their doctors haven’t been able to diagnose. They try to convince people that normal Lyme tests aren’t sensitive enough to detect infections and therefore should be ignored, leading many to think they’re positive despite negative tests. There are even speciality labs that claim to have developed their own Lyme tests. Virtually everyone who submits a sample to these labs comes back positive, regardless of their actual status. To be clear: Patients in both groups are suffering very real symptoms. The debate is not about whether or not these people are sick. The issue is that “Chronic Lyme” has become so crowded by pseudoscience and quackery in the latter group that there are scores of people on the internet who don’t actually have Lyme disease yet are convinced that Lyme explains all of their problems. This has made a mess of the public discourse on the topic and even made such a mockery of the field that many researchers have opted to avoid the topic of Lyme research altogether for fear of being associated with the quackery. We need to have sympathy for patients in both groups, as they are clearly suffering. However, we also need to be clear about drawing a line between the pseudoscience and the real science, which isn’t always as easy as it looks. Journalists and writers like this one tend to start playing a “both sides” strategy to blur the lines between the real science and the pseudoscience. When people have vague, unexplained symptoms, it can be tempting to go down the path of “what if the pseudoscience is actually right…”. Resist that urge, though. Too many patients are stuck with a misdiagnoses of Lyme disease when they really have some other condition. Encouraging the pseudoscientific chronic Lyme explanation for everything is only holding them back from finding their real diagnosis.
- 5y ago
podiki 5y ago
Something I think everyone should know about Lyme disease: we have an effective vaccine! I remember when this happened because work done in imaging the proteins from Lyme disease happened at a nearby lab (Brookhaven) in the late 90s. In short, it was withdrawn because of unfounded complaints about side effects (i.e. anti-vaxers is how I read it). We still have vaccines for dogs, and there are newer ones being developed, but the whole thing is just a terrible success for the anti-science and vaccine crowd. And knowing people that have suffered from Lyme, it is even worse knowing it was all preventable. A bit too timely these days, no? Also pretty astounding to me that it seems the existence of a vaccine never comes up in Lyme coverage, nor do people that get it (or at risk, which is an ever widening area due to climate change as well) know about it. (See here [0] for a brief overview, and the related references) [0] https://en.wikipedia.org/wiki/Lyme_disease#Vaccination https://en.wikipedia.org/wiki/Lyme_disease#Vaccination
- lend000 5y ago
  Note that your link describes support for the vaccine being withdrawn after causing autoimmunity in a non-negligible number of people. Anti-vaxxers don't typically go out and get a new and unnecessary vaccine, so I don't see how the complaints could be described as such. What's interesting is that the type of autoimmune effects described are pretty similar to chronic lyme, suggesting that antibodies/B-cells produced either naturally or after exposure to the vaccine (binding to one of the surface proteins on the bacteria) may have a negative biological effect in some percentage of people.
vimy 5y ago
A lot of misinformation in that article. There is no doubt about it anymore that Lyme persisters are real or that standard two weeks of antibiotics can't eradicate it all. The debate has shifted towards denying that the remaining spirochetes are the cause of illness. Which is of course a ludicrous position as it flies in the face of germ theory. > How Lyme persists Unlike typical bacteria, Borrelia has the ability to evade the immune system by propelling itself to different areas of the body, changing its outer surface proteins and shapeshifting—mechanisms that also help the bacteria resist standard antibiotics. Prior research has pointed to persistent infection as the cause of chronic Lyme disease including research by Fallon at Columbia University, Embers at Tulane University, Lewis at Northeastern University, Baumgarth at University of California, Davis, Zhang at Johns Hopkins University, Aucott at Johns Hopkins University, Novak at Harvard Medical School and many others. Multiple studies in both animals and humans over several decades have demonstrated both inflammation and persistence of Borrelia in the nervous system following doxycycline treatment. Using three highly sensitive methods of detection validated with nonhuman primate samples at Tulane National Primate Research Center, the research team concluded that at the donor’s time of death, her central nervous system still harbored intact spirochetes in spite of aggressive antibiotic therapy for Lyme disease at different times throughout her illness. The researchers employed the use of immunofluorescence staining to image the spirochetes, polymerase chain reaction or PCR to detect the presence of B. burgdorferi DNA, and RNAscope to determine whether the spirochetes were viable. https://www.lymedisease.org/lyme-spirochetes-autopsied-brain/ https://www.lymedisease.org/lyme-spirochetes-autopsied-brain... >New study finds Lyme bacteria survive a 28-day course of antibiotics ... The data show that living B. burgdorferi spirochetes were found in ticks that fed upon the primates and in multiple organs after treatment with 28 days of oral doxycycline. The results also indicated that the immune response to the bacteria varied widely in both treated and untreated subjects. “It is apparent from these data that B. burgdorferi bacteria, which have had time to adapt to their host, have the ability to escape immune recognition, tolerate the antibiotic doxycycline and invade vital organs such as the brain and heart,” said lead author Monica Embers, PhD, assistant professor of microbiology and immunology at Tulane University School of Medicine. https://www.lymedisease.org/lyme-study-embers/ https://www.lymedisease.org/lyme-study-embers/ > In summary, we provide several lines of evidence that suggest that B. burgdorferi can persist in the human body, not only in the spirochetal but also in the antibiotic-resistant biofilm form, even after long-term antibiotic treatment. The presence of infiltrating lymphocytes in the vicinity of B. burgdorferi biofilms suggests that the organism in biofilm form might trigger chronic inflammation. https://pubmed.ncbi.nlm.nih.gov/31614557/ https://pubmed.ncbi.nlm.nih.gov/31614557/ > Conclusions: Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined. https://www.researchgate.net/publication/324539470_Persistent_Borrelia_Infection_in_Patients_with_Ongoing_Symptoms_of_Lyme_Disease https://www.researchgate.net/publication/324539470_Persisten...
stevebmark 5y ago
An interesting mention in the article: > There was levofloxacin, which can cause Achilles tendon rupture Levofloxacin is a fluoroquinolone antibiotic (a generic, also under the brand name Levaquin), along with ciprofloxacin, norfloxacin, and others. Fluoroquinolones can cause a large variety of permanent and disabling systems that doctors are not well trained to recognize. They don't just attack the achilles tendon, for example, they can cause tendon ruptures anywhere in the body, as well as retinal detachments. The Achilles is more likely to go first simply because it's a more used tendon with a higher load to tendon size ratio. They also can cause a variety of permanent neurological conditions which doctors also aren't well trained to recognize. These drugs are well documented to potentially cause permanent damage to your nervous system, yet doctors don't know about the how or why of the damage, if they are even aware of the link. In my experience, most aren't, given that the link wasn't discovered until more than 30 years after the drugs were released. They also cause mitochondrial impairment and die-off, along with mitochondrial DNA damage. Given all of this, how many long term chronic sufferers might have side effects related to fluoroquinolones? Many people who are affected report neuropathy, brain fog, physical impairments, and sometimes psychosis. Given that fluoroquinolones are documented to attack almost any part of human body functioning, how do you accurately link long term chronic conditions to the use of these drugs? For fluoroquinolone damage, there aren't even tests to confirm links, only the lucky few will have doctors who put together the notes from taking medical history.
- whatshisface 5y ago
  Mitochondrial damage is probably the cornerstone of the side effects of this class of antibiotics, for the following reasons: - Nerves, especially peripheral nerves, have some of the slowest mitochondrial replacement in the body. This makes them especially vulnerable compared to say the shortlived cells in your stomach lining. - Fluoroquinolone antibiotics are designed to attack bacterial gene replication, but they are known to attack mitochondrial gene replication as well. [0] - There's a surprisingly close resemblance between the diabetic symptoms caused by sustained high blood glucose and the side effects of fluoroquinolones - including tendinitis. That makes sense because mitochondria are the center of oxidative stress in the cell (due to their role in metabolism) and are also damaged, by a different mechanism, during periods of high blood sugar. [0] https://academic.oup.com/nar/article/46/18/9625/5088042 https://academic.oup.com/nar/article/46/18/9625/5088042
Arete314159 5y ago
Researchers have done autopsies on Lyme patients who have been treated with antibiotics multiple times, and they have still found in some cases that the bodies of the deceased had active, post-antibiotic infection. https://www.frontiersin.org/articles/10.3389/fneur.2021.628045/full https://www.frontiersin.org/articles/10.3389/fneur.2021.6280... There are also some new treatments on the horizon such as dapsone (the antibiotic used for leprosy) and disulfiram, that appear to be giving chronically ill post-treatment lyme patients new relief. This would imply that the antibiotic treatments used before were simply not the right ones to knock out persistent infection. To my mind, the biggest issue with post-treatment lyme is that the current medical model is wrong and outdated. We think of Lyme as like strep throat - cured with a short course of antibiotics - when we should be thinking of it like TB and Leprosy. TB patients have to take a long, grueling course of antibiotics, and even so sometimes TB can be isolated from bone marrow after treatment. The variable nature of the disease coupled with the fact that some people do indeed improve with short courses leads medicine to make lazy generalizations that leave out about 20% of the population's disease experience. My hope is that Covid will help us to learn about other post-infectious syndromes. Long Covid was initially brushed off, but the tsunami of cases coupled with some patients' improvement after vaccination has changed the general opinion to be "Long Covid does actually exist." I hope that will help sufferers from Long Lyme, Long Epstein-Barr, and so on finally get some validation and perhaps even better treatments.
- cpncrunch 5y ago
  The article you posted is talking about Neuroborreliosis, which is a real thing. The problem with 'chronic lyme' is that it covers a lot of different things. You have the people who never had a rash, tested negative on the standard tests, and never had any symptoms consistent with lyme, then test positive with an unvalidated test, do some weird and wacky treatment like HBOT.
- nradov 5y ago
  Long COVID was never really brushed off by most clinicians or researchers. Post viral syndrome has been recognized and actively researched for decades. It appears that many different viral infections can cause persistent symptoms. https://pubmed.ncbi.nlm.nih.gov/3063394/ https://pubmed.ncbi.nlm.nih.gov/3063394/ The real questions were about incidence, severity, and mechanism. At this point around 36% of Americans have been infected with SARS-CoV-2 and so some of those people label any minor symptom they feel as "long COVID" without any evidence of causality.
deleted 5y ago
[deleted]
Cosmopolytan 5y ago
I'm not even close to an expert on chronic lyme; however, as with most things about which there is a lot of debate in medicine: - the symptoms are vague and/or nonspecific - any tests or diagnostic criteria for chronic lime have poor specificity (i.e. a high number of false positives) - no reasonable pathophysiologic mechanism has been demonstrated / explained, or at the very least the pathophysiology is poorly understood
notananthem 5y ago
Chronic Lyme conversations always attract conspiracy theorists unfortunately for people with lyme disease

72 points by hprotagonist 5y ago

For what it's worth, my wife has ~something~. She hasn't gotten a consistent diagnosis--Fibromyalgia, etc. She tested positive for Lyme at some point. All we know is that she's sore and tired all the time and has mysterious allergic reactions to things, all the things that get chucked into the garbage can of vague diagnoses around which swarm cranks, grifters, and quacks. I appreciated the sensitivity and nuance of this article.

nsndndnnb 5y ago
Has she seen a neurologist? My wife has MS and your description -- minus the positive Lyme test -- reminds me of the period of unexplainable symptoms that eventually led up to seeing a neurologist and getting an MRI and lo and behold lesions on the brain and spine that explained everything
bobmichael 5y ago
Has your wife considered that her symptoms are PPD (https://ppdassociation.org/diagnosis https://ppdassociation.org/diagnosis), i.e. have a psychological cause which can be unconscious? I had been suffering from unspecific aches, extreme tiredness, insomnia, sore throats, and other non-specific symptoms for the past 8 months. I had to take months of medical leave and went through 10+ doctors, accumulating negative tests and inconsistent diagnoses as I went along. Then, despairing, I read The Mindbody Prescription by Dr. Sarno and realized that my symptoms were due to repressed unconscious emotions. Since starting a free online recovery program a couple of months ago, I've gotten 80% better and I'm planning to resume work in a couple of weeks. I know this sounds just like more quackery, but I promise you it isn't. There's more and more peer-reviewed research supporting the theory behind PPD, and the track record of long-term recovered patients speaks for itself. Feel free to email me at me [at] bobmichael [dot] io if you or your wife would like to chat more about this.
- thewebcount 5y ago
  As a counterpoint, my wife also has a ~~something~~ diagnosis. She's been dealing with it for 10+ years now. She eventually went through 2 or 3 of these types of recovery programs and they did nothing for her. Some of them were even sort of gaslighting, saying that it was all psychological, when it very clearly isn't. I don't want to diminish what anyone else has gone through, just be sure that you're prepared for yet another treatment to not work if you try something like this. I hope that it does work for those who try it, but it may not, and that can be even more frustrating to someone who has been told by doctor after doctor that "it's all in their head." She tried fixing whatever's in her head, and that also didn't work.
AuryGlenz 5y ago
~something~ is one of the worst diagnoses to have. I had a bad concussion when I was 12 and ever since (I’m 33 now) I’ve had issues. Fatigue is the big one, but I also lost 2 inches of height, my feet shrunk two sizes, and my hands are as small as my mom’s. I’m male. There are other possible symptoms too, like cold hands and feet and too much heat/sunlight making me worthless for the next day or so. As I’m sure you know it can be hard to know which symptoms to group together. Are my cluster headaches related? Who knows. The only actual treatable aspect of this that they’ve found is my testosterone being too low. Supplementing that helps significantly, but it’s not enough. I personally think my growth hormone levels might be off, but my GP doesn’t know how to run the test for that and endocrinologists are the worst. I’ve been to Mayo quite a few times. The last time I was there the best guess they had for the testosterone problem was that my body thought it was dying, so it was diverting resources. I know that we don’t know everything and sometimes you’re out of luck, but it’s still frustrating nonetheless. It’s even worse when they can’t find anything physiological to test for. Before I asked to have my testosterone levels checked they just threw me on antidepressants and called it good. The only thing I was depressed about was being so damned tired all the time.
- nradov 5y ago
  Is your GP unable to order these tests, or are they contraindicated in your case? https://www.labcorp.com/resource/growth-hormone-stimulation https://www.labcorp.com/resource/growth-hormone-stimulation Loss of height is common in the elderly due to cartilage loss but is rare among younger people. Have you had any spinal imaging done? And have you had your bone density checked?
  - AuryGlenz 5y ago
    He wasn’t able to as their clinic simply doesn’t run any of those tests. I didn’t pursue it further as life/trying to have a baby got in the way, but at some point I’ll pick it back up for my own health if nothing else No spinal imaging done but I did have a bone density test done, though I was told it was more to get a baseline for the future. Oddly enough the trans movement has given me a clue. Apparently MtF trans people can have height loss and, if I remember correctly, hand and foot size loss. It could simply be that my testosterone level was low enough to cause that, perhaps because it happened smack dab in the middle of puberty. When I was first tested my levels definitely weren’t trans-level, but that was about 10 years after the accident so maybe my levels were even lower for a while. It’d be nice to know for sure though.
Arete314159 5y ago
If memory serves, some diseases can trigger something called Mast Cell Activation, which in effect...makes your body get allergic reactions to tons of things. I HIGHLY recommend that, if it's in your budget, she make an appointment at the Center for Complex Diseases. They specialize in these sorts of issues. They are also really good at finding potential tick-borne coinfections such as Babesia and Bartonella. These are tricky to culture and they know which labs are best. I believe they are doing tele-health during Covid. https://www.centerforcomplexdiseases.com/ https://www.centerforcomplexdiseases.com/ Note that the CCD is Not Cheap. While you can get insurance reimbursement for some of the doctor visits, it won't cover the whole thing. But I spent 10 years going to 'regular' doctors and I made more progress with them in 5 months than I did in the previous 5 years of medical appointments.
- Arete314159 5y ago
  I mention co-infections because the treatment for Lyme (doxycycline) is not as effective with some coinfections. Like I think the treatment for Babesia is clindamycin + some form of quinine. It's a parasite that infects red blood cells, kind of like malaria. So one possibly out of many is your wife could have been treated successfully for Lyme, but still have an underlying active co-infection. That's why seeing the right doctors is so important.
  - thewebcount 5y ago
    Yeah, my spouse has something like this, and tracing it back, we realized that it all started when she went off a long-term doxycycline treatment for adult acne. We've been trying to get a doctor to get her a new prescription, but many have been cagey because it's an antibiotic and they don't want to have her develop an antibiotic-resistant strain of some other disease in the process. Honestly, I can't imagine it would be any worse than 10 years of a deteriorating life where she can no longer work, or do anymore physical exercise than casually walking 1/4 of a mile. (She was previously a professional dancer, so you can imagine the psychological toll this has had.)
drc500free 5y ago
FWIW, a ~something~ that includes severe fatigue and allergic reactions sounds a lot like MCAS + Dysautonomia.

yasp 5y ago

https://archive.is/8fID0 https://archive.is/8fID0

hprotagonist 5y ago

huh, my archive.org link got stripped. https://web.archive.org/web/20180725163428/https://www.nybooks.com/daily/2018/07/25/the-challenge-of-chronic-lyme/ https://web.archive.org/web/20180725163428/https://www.nyboo... is the relevant snapshot. To me, this is a great piece that discusses, at length, the balancing act that clinicians have to perform when dealing with idiopathic conditions. It seems clear that lyme isn't the cause of "chronic lyme", but then, how do you compassionately handle people who are clearly suffering, while also not reinforcing a false belief, dangerous treatments, etc.?

m0llusk 5y ago
It is not really clear that "lyme isn't the cause of chronic lyme". Borrelia bacteria are the prime suspects and are extremely tricky spirochetes to deal with. There are multiple variants and they migrate around the body traveling easily through most tissues. There are dozens of symptoms that may exhibit at any part of the body. So there could be many factors involved, but Borrelia really are complex and capable enough to potentially explain everything. The real question is how to deal with such an infection.

clydethefrog 5y ago

I can recommend the book Bitten by Kris Newby for another theory why it might not be in the interest of everyone to classify chronic Lyme as a disease. Especially for people who loved the reports about the lab leaks in China last year. https://www.krisnewby.com/about-the-book https://www.krisnewby.com/about-the-book

computer23 5y ago
Kris Newby produced the propaganda documentary Under Our Skin and her conspiracy theories about "bioweapons" are nonsensical on their face: https://sciencebasedmedicine.org/a-review-of-under-our-skin-a-cult-classic/ https://sciencebasedmedicine.org/a-review-of-under-our-skin-... https://theconversation.com/no-lyme-disease-is-not-an-escaped-military-bioweapon-despite-what-conspiracy-theorists-say-120879 https://theconversation.com/no-lyme-disease-is-not-an-escape...

wyager 5y ago

The current state of diagnostics is pretty shameful. For all that proponents of modern medical institutions like to use the phrase “evidence-based”, there is very little evidence used in much of modern diagnostics. Run a few scans and tests, nothing shows up, pick from a grab-bag of vague, underspecified, and unfalsifiable disorders. There is so much guesswork and speculation. It’s only in the last 3-4 years that we’ve actually started using genetic testing for CSF diagnostics, and this isn’t even widely used! https://nextgendiagnostics.ucsf.edu/ https://nextgendiagnostics.ucsf.edu/

nradov 5y ago
It takes many years of painstaking research to build up the body of knowledge necessary for evidence-based medicine to become effective. This isn't shameful, it's just how the process works.
- wyager 5y ago
  Doctors habitually indicate confidence levels incommensurate with available evidence. Doctors say “it’s fibromyalgia” instead of “I don’t know”, which is neither evidence-based nor “how the process works”.

PragmaticPulp 5y ago

When it comes to anything “Chronic Lyme” — be careful. There are two distinct worlds in Chronic Lyme research: One world involves researchers looking for the cause of very real symptoms that can persist in some Lyme disease patients even after treatment. This could come from some damage done by the infection, a lingering autoimmune response triggered by Lyme disease, or some other unknown lasting state that occurs after the disease in some patients. This is commonly known as “Post Treatment Lyme Disease” syndrome and it isn’t as controversial as some of these articles make it sound. The other world is an alternative medicine faction that has misused Lyme Disease as a catch-all label for unexplained chronic symptoms. They leverage the non-specific list of Lyme disease symptoms and some of the unknowns about the disease to convince desperate patients that Lyme is an explanation for all of the difficult problems their doctors haven’t been able to diagnose. They try to convince people that normal Lyme tests aren’t sensitive enough to detect infections and therefore should be ignored, leading many to think they’re positive despite negative tests. There are even speciality labs that claim to have developed their own Lyme tests. Virtually everyone who submits a sample to these labs comes back positive, regardless of their actual status. To be clear: Patients in both groups are suffering very real symptoms. The debate is not about whether or not these people are sick. The issue is that “Chronic Lyme” has become so crowded by pseudoscience and quackery in the latter group that there are scores of people on the internet who don’t actually have Lyme disease yet are convinced that Lyme explains all of their problems. This has made a mess of the public discourse on the topic and even made such a mockery of the field that many researchers have opted to avoid the topic of Lyme research altogether for fear of being associated with the quackery. We need to have sympathy for patients in both groups, as they are clearly suffering. However, we also need to be clear about drawing a line between the pseudoscience and the real science, which isn’t always as easy as it looks. Journalists and writers like this one tend to start playing a “both sides” strategy to blur the lines between the real science and the pseudoscience. When people have vague, unexplained symptoms, it can be tempting to go down the path of “what if the pseudoscience is actually right…”. Resist that urge, though. Too many patients are stuck with a misdiagnoses of Lyme disease when they really have some other condition. Encouraging the pseudoscientific chronic Lyme explanation for everything is only holding them back from finding their real diagnosis.

5y ago

podiki 5y ago

Something I think everyone should know about Lyme disease: we have an effective vaccine! I remember when this happened because work done in imaging the proteins from Lyme disease happened at a nearby lab (Brookhaven) in the late 90s. In short, it was withdrawn because of unfounded complaints about side effects (i.e. anti-vaxers is how I read it). We still have vaccines for dogs, and there are newer ones being developed, but the whole thing is just a terrible success for the anti-science and vaccine crowd. And knowing people that have suffered from Lyme, it is even worse knowing it was all preventable. A bit too timely these days, no? Also pretty astounding to me that it seems the existence of a vaccine never comes up in Lyme coverage, nor do people that get it (or at risk, which is an ever widening area due to climate change as well) know about it. (See here [0] for a brief overview, and the related references) [0] https://en.wikipedia.org/wiki/Lyme_disease#Vaccination https://en.wikipedia.org/wiki/Lyme_disease#Vaccination

lend000 5y ago
Note that your link describes support for the vaccine being withdrawn after causing autoimmunity in a non-negligible number of people. Anti-vaxxers don't typically go out and get a new and unnecessary vaccine, so I don't see how the complaints could be described as such. What's interesting is that the type of autoimmune effects described are pretty similar to chronic lyme, suggesting that antibodies/B-cells produced either naturally or after exposure to the vaccine (binding to one of the surface proteins on the bacteria) may have a negative biological effect in some percentage of people.

vimy 5y ago

A lot of misinformation in that article. There is no doubt about it anymore that Lyme persisters are real or that standard two weeks of antibiotics can't eradicate it all. The debate has shifted towards denying that the remaining spirochetes are the cause of illness. Which is of course a ludicrous position as it flies in the face of germ theory. > How Lyme persists Unlike typical bacteria, Borrelia has the ability to evade the immune system by propelling itself to different areas of the body, changing its outer surface proteins and shapeshifting—mechanisms that also help the bacteria resist standard antibiotics. Prior research has pointed to persistent infection as the cause of chronic Lyme disease including research by Fallon at Columbia University, Embers at Tulane University, Lewis at Northeastern University, Baumgarth at University of California, Davis, Zhang at Johns Hopkins University, Aucott at Johns Hopkins University, Novak at Harvard Medical School and many others. Multiple studies in both animals and humans over several decades have demonstrated both inflammation and persistence of Borrelia in the nervous system following doxycycline treatment. Using three highly sensitive methods of detection validated with nonhuman primate samples at Tulane National Primate Research Center, the research team concluded that at the donor’s time of death, her central nervous system still harbored intact spirochetes in spite of aggressive antibiotic therapy for Lyme disease at different times throughout her illness. The researchers employed the use of immunofluorescence staining to image the spirochetes, polymerase chain reaction or PCR to detect the presence of B. burgdorferi DNA, and RNAscope to determine whether the spirochetes were viable. https://www.lymedisease.org/lyme-spirochetes-autopsied-brain/ https://www.lymedisease.org/lyme-spirochetes-autopsied-brain... >New study finds Lyme bacteria survive a 28-day course of antibiotics ... The data show that living B. burgdorferi spirochetes were found in ticks that fed upon the primates and in multiple organs after treatment with 28 days of oral doxycycline. The results also indicated that the immune response to the bacteria varied widely in both treated and untreated subjects. “It is apparent from these data that B. burgdorferi bacteria, which have had time to adapt to their host, have the ability to escape immune recognition, tolerate the antibiotic doxycycline and invade vital organs such as the brain and heart,” said lead author Monica Embers, PhD, assistant professor of microbiology and immunology at Tulane University School of Medicine. https://www.lymedisease.org/lyme-study-embers/ https://www.lymedisease.org/lyme-study-embers/ > In summary, we provide several lines of evidence that suggest that B. burgdorferi can persist in the human body, not only in the spirochetal but also in the antibiotic-resistant biofilm form, even after long-term antibiotic treatment. The presence of infiltrating lymphocytes in the vicinity of B. burgdorferi biofilms suggests that the organism in biofilm form might trigger chronic inflammation. https://pubmed.ncbi.nlm.nih.gov/31614557/ https://pubmed.ncbi.nlm.nih.gov/31614557/ > Conclusions: Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined. https://www.researchgate.net/publication/324539470_Persistent_Borrelia_Infection_in_Patients_with_Ongoing_Symptoms_of_Lyme_Disease https://www.researchgate.net/publication/324539470_Persisten...

stevebmark 5y ago

An interesting mention in the article: > There was levofloxacin, which can cause Achilles tendon rupture Levofloxacin is a fluoroquinolone antibiotic (a generic, also under the brand name Levaquin), along with ciprofloxacin, norfloxacin, and others. Fluoroquinolones can cause a large variety of permanent and disabling systems that doctors are not well trained to recognize. They don't just attack the achilles tendon, for example, they can cause tendon ruptures anywhere in the body, as well as retinal detachments. The Achilles is more likely to go first simply because it's a more used tendon with a higher load to tendon size ratio. They also can cause a variety of permanent neurological conditions which doctors also aren't well trained to recognize. These drugs are well documented to potentially cause permanent damage to your nervous system, yet doctors don't know about the how or why of the damage, if they are even aware of the link. In my experience, most aren't, given that the link wasn't discovered until more than 30 years after the drugs were released. They also cause mitochondrial impairment and die-off, along with mitochondrial DNA damage. Given all of this, how many long term chronic sufferers might have side effects related to fluoroquinolones? Many people who are affected report neuropathy, brain fog, physical impairments, and sometimes psychosis. Given that fluoroquinolones are documented to attack almost any part of human body functioning, how do you accurately link long term chronic conditions to the use of these drugs? For fluoroquinolone damage, there aren't even tests to confirm links, only the lucky few will have doctors who put together the notes from taking medical history.

whatshisface 5y ago
Mitochondrial damage is probably the cornerstone of the side effects of this class of antibiotics, for the following reasons: - Nerves, especially peripheral nerves, have some of the slowest mitochondrial replacement in the body. This makes them especially vulnerable compared to say the shortlived cells in your stomach lining. - Fluoroquinolone antibiotics are designed to attack bacterial gene replication, but they are known to attack mitochondrial gene replication as well. [0] - There's a surprisingly close resemblance between the diabetic symptoms caused by sustained high blood glucose and the side effects of fluoroquinolones - including tendinitis. That makes sense because mitochondria are the center of oxidative stress in the cell (due to their role in metabolism) and are also damaged, by a different mechanism, during periods of high blood sugar. [0] https://academic.oup.com/nar/article/46/18/9625/5088042 https://academic.oup.com/nar/article/46/18/9625/5088042

Arete314159 5y ago

Researchers have done autopsies on Lyme patients who have been treated with antibiotics multiple times, and they have still found in some cases that the bodies of the deceased had active, post-antibiotic infection. https://www.frontiersin.org/articles/10.3389/fneur.2021.628045/full https://www.frontiersin.org/articles/10.3389/fneur.2021.6280... There are also some new treatments on the horizon such as dapsone (the antibiotic used for leprosy) and disulfiram, that appear to be giving chronically ill post-treatment lyme patients new relief. This would imply that the antibiotic treatments used before were simply not the right ones to knock out persistent infection. To my mind, the biggest issue with post-treatment lyme is that the current medical model is wrong and outdated. We think of Lyme as like strep throat - cured with a short course of antibiotics - when we should be thinking of it like TB and Leprosy. TB patients have to take a long, grueling course of antibiotics, and even so sometimes TB can be isolated from bone marrow after treatment. The variable nature of the disease coupled with the fact that some people do indeed improve with short courses leads medicine to make lazy generalizations that leave out about 20% of the population's disease experience. My hope is that Covid will help us to learn about other post-infectious syndromes. Long Covid was initially brushed off, but the tsunami of cases coupled with some patients' improvement after vaccination has changed the general opinion to be "Long Covid does actually exist." I hope that will help sufferers from Long Lyme, Long Epstein-Barr, and so on finally get some validation and perhaps even better treatments.

cpncrunch 5y ago
The article you posted is talking about Neuroborreliosis, which is a real thing. The problem with 'chronic lyme' is that it covers a lot of different things. You have the people who never had a rash, tested negative on the standard tests, and never had any symptoms consistent with lyme, then test positive with an unvalidated test, do some weird and wacky treatment like HBOT.
nradov 5y ago
Long COVID was never really brushed off by most clinicians or researchers. Post viral syndrome has been recognized and actively researched for decades. It appears that many different viral infections can cause persistent symptoms. https://pubmed.ncbi.nlm.nih.gov/3063394/ https://pubmed.ncbi.nlm.nih.gov/3063394/ The real questions were about incidence, severity, and mechanism. At this point around 36% of Americans have been infected with SARS-CoV-2 and so some of those people label any minor symptom they feel as "long COVID" without any evidence of causality.

deleted 5y ago

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Cosmopolytan 5y ago

I'm not even close to an expert on chronic lyme; however, as with most things about which there is a lot of debate in medicine: - the symptoms are vague and/or nonspecific - any tests or diagnostic criteria for chronic lime have poor specificity (i.e. a high number of false positives) - no reasonable pathophysiologic mechanism has been demonstrated / explained, or at the very least the pathophysiology is poorly understood

notananthem 5y ago

Chronic Lyme conversations always attract conspiracy theorists unfortunately for people with lyme disease