The Challenge of “Chronic Lyme” (2018)
nybooks.com
nybooks.com
> 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.
- 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.
Now this is highly speculative and I have no real evidence for it. But is it possible that widespread use of antibiotics could be one of the factors behind the increase in metabolic diseases like obesity and type 2 diabetes?
Prior to that experience I had no idea how potentially dangerous and neurologically damaging these antibiotics can be, and in particular I am at very high risk of retinal detachment and should have been contraindicated on that reason alone. However, these are first-line antibiotics for many conditions, including relatively common conditions like traveler's diarrhea. Sadly, due to antibiotic resistance we are running out of "gentler" antibiotic options, and so we (as a society) use "rougher" first-lines now.
I have been tested for nearly everything, including punch biopsy to check for SFN. All negative. I have been to Mayo, Rush, UIC and other large hospital networks with physicians who would be considered "top" in the country. Always saying this has started instantly during my cipro IV. Out of 40+ doctors I have seen, 3 recognized it as a possibility, others completely ignored my claims.
I have since then met many people who suffered from many weird symptoms, some got better over a long period of time. Then, took the antibiotic again because they did not know it caused their issues, only to end up with even worse health issues than the first time.
At this point I have completely given up on the medical field. I am doing PT, which seems to be improving some of the tendon issues and doing aerobic exercise.
I am and many others are testing supplements, PRP injections, peptides, and novel possible treatments for nerve damage as long as there is scientific evidence.
In the end, I seem to be making improvements even today. Initially I could not walk up the stairs due to extreme pain. I was bed bound for 2 weeks. These days I'm working, exercising and learning new things. My brain fog is mostly gone. I do get pain here and there, dry eyes but many are much worse off than I am. Still have some neurological twitches, mild insomnia and fatigue but I can get on with my life. I have completely improved my diet, tried many protocols and supplements.
Also, I understand risks with medications, even though at the time the doctor did not advise of any risk at all. This isn't my problem with flouroquinolones, as they could save a life. I have a problem with a completely ignorant medical field........these doctors are ignoring last 20 years of research and FDA/EMA warnings. I legitimately lost trust for doctors. Today, these risks are very well documented. Yet, here we are.
Edit: The only test that was odd was an MRI of my hip. I had an MRI before cipro due to labral tear from sports. After cipro I had another one and the two were compared. It was noted that I had some loss of cartilage.
It completely distroyed me in ways I couldn't imagine before. It literally turned on genes that are difficult to turn back.
In the beginning my entire body was vibrating at crazy high speed heart rate was. Instant depression. Nervous system completely shot. Bloating so bad at times deep breathing for hours was required after any food. Couldn't sleep more than 4 hours. I lost 75 pounds in 1 1/2 months. I kept dropping until I went from 240 to 142.
Years later I still only eat 7 foods. At least the depression is gone.
Doctors I found to be unhelpful.
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.
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.
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.
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.
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?
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.
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/
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.
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.?
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.
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.
- 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
> 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...
>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/
> 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/
> 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_Persisten...
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)
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.
https://sciencebasedmedicine.org/a-review-of-under-our-skin-...
https://theconversation.com/no-lyme-disease-is-not-an-escape...