Lessons from Long Haul Lyme & Long Haul COVID | Johns Hopkins Rheumatology

May is Lyme Disease Awareness Month. Educate yourself about Lyme disease and tick-borne disease and how to keep your family safe.

Many of the persistent symptoms in Lyme disease are remarkably similar to those of COVID long haulers. Long haul COVID should heed lessons from long haul Lyme disease. Research in both may provide new insights into long haul disease mechanisms.

[KathleenJean]

So can we Lyme long haulers get some attention please. Many doctors turn us away and often humiliate us. No insurance covers us . I was never treated with enough antibiotic. I know I have living infection inside me and I am fighting it alone and for years. I want help. It is not all in my head. I am a former microbiologist. I expected better.

[costanza]

I've suffered with symptoms for at least 30 years and had been given every (wrong) test and diagnosis under the sun. Just last summer I was diagnosed with Lyme after I heard about it on a podcast, did my own research, and sought out a doctor who was willing to do proper testing. If patients and their doctors had been believed and listened to rather than mocked (and had licenses suspended) for decades, we'd probably have answer to long covid already.

[wvgvdwu]

Just thank you... thank you for acknowledging we're suffering.
Im so sick of having to hide my illness from doctors when I see them because of the stigma. I just want help

[LR-pxms]

The breathlessness could be related to disautonomia/POTS not necessarily lung issues.

[AndreeaTrandafirFlagshipMed]

Thank you, Doctor, for the great insight on these diseases!

[cbryce]

Thank you Doctor, It's nice to hear a doctor admit that in the past, they treated us like we were drug seeking or hypochondriacs.
Many, if not most autoimmune diseases, cause all the symptoms the doctor mentioned. Not only Fibromyalgia, Chronic Fatigue, Lyme and C19, but Erythromelalgia (EM), Polymyalgia Rheumatica (PMR), Celiac(CD), and arthritis, and bone necrosis, to name a few, all cause exhaustion, foggy thinking, and pain.

[PaulduCoudray]

(Just a note to your video editor: imagine having all of these symptoms simultaneously and trying to listen to what is being said while a piano hammers out elevator music in the not-so-distant background)

[victoriamuir]

I have suffered with Lyme and all it’s after affects since 1986. I received no treatment back then because my California doctors said it was an east coast disease. Now I’m in my 2nd month of suffering with affects of the Delta variant. I going to watch these studies closely.

[okzoomer]

I had the same symptoms from black mold exposure. My immune system went nuts trying to neutralize all of the very potent mycotoxins and inflamed my skin, nervous system, and muscles in an attempt to flush those toxins. And that doesn't include the direct toxigenic effects on my health from mold exudates.

This mold exposure lead to chronic innate immune system activation (CIRS) and I bear the scars to this day, despite recovering. They initially thought I had chronic lyme, and many of these long covid symptoms also sound close to home to me even though I've never gotten covid.

These long-term inflammatory responses to harmful substance traces and pathogen residues in the body, as occurs in long covid, chronic lyme, and other endogenous toxin exposures, are likely autoimmune diseases and should be treated and addressed as autoimmune diseases are in medicine.

[suefyffe]

I was tested 4 times every test came back positive.not much help from any doctor that I went to.really wish there was help for Lyme patients.

[brookem.]

Also- thank you so much for spreading awareness and information about this!

[christine]

I’ve suffered silently from my 1999 Lymes!! I knew IF I got COVID I’d be screwed. I got it in April on my 60th bday!!! I’m still sick… no surprise. But I’m suffering way worse now. Lost smell. Taste. Soooo tired. And debilitating headache non stop.. plus the joint pains. Zaps ⚡️ and all my other stuff. I hope they figure something out that’s covered by friggin insurance and more doctors know about……

[Tinyteacher]

I took my 36 year-old son to the hospital a few days ago with all these symptoms, and his doctor said his symptoms are from anxiety and sent him home!
However, he has mold toxicity, Bartonella and Babesia, and got Covid in January. He’s taking antibiotics and ivermectin prescribed by an MD, who is also a specialist in stealth infections.
He’s had an excruciating headache since then. He cries because he hurts all over and is now delusional and paranoid, etc. He has all these symptoms, both neurological and psychological, has been in psychosis, is chronically fatigued and the list goes on…
He’s been living here for 19 months because he got the mold toxicity from his dad’s house.
However, when he came home from the hospital, 2 days ago, he suddenly doesn’t believe that he has a brain infection and has been yelling at me and calling me names all day! My dog is scared to death!
Within 3 days, he’s lost his mind!
I’ve spent the last 19 months taking care of him every single day, and all of a sudden he says he’s always hated me.
BTW, His dad is living here too because he never got his house remediated, and I’ve let him. Stupid me!
I’m crying, because have NO idea what happened!

[nanrich]

I wonder if covid and lyme are similar, is because they were both develped in a lab? Ive have been sick for 20 uears. I was treated 2 times with intro antibiotics for 28 days 1 year apart. It went to my brain. MY cognitive abilities have never been the same.

[ywysdzx]

Hey, can you figure out the Long Covid already because I'm about to become homeless, thanks.

[justtest]

I wish somebody conducted study about cell death markers in blood of these patients. CK, NSE, ALAT etc.

[VmKobudo]

i can not explain my sickness in english language, but i had feelings im going to die be'cauos of covid-19. i have runny nose, cold feelings short of breath, muscle pain. headache, sleeplessness, continue FATIGUE, blood lose from the nose, chills, many other symptoms i cant explaing in english. those all happened in Finland spring of 2021 and now days i only have fatigue. please u and my fellow earth walkers take this outbeak of diseace seriously, it can chance our life for a long long time. now its time to rehab. activety do some sport and think positevely. go on. no matter where u live. live will continue.

[nickb]

Re activation of Epstein Barr from immune system being compromised by either covid and Lyme. That’s why the long haul in both are dam near the same with mononucleosis like fatigue. I had Lyme followed by covid and Ebv fatigue after reactivation of the Ebv virus

[sunspot]

Been very unwell for an entire year now after a known bite from a lyme-carrying deer tick. I've tried a number of different antibiotics, but still nothing has worked so far. I was extremely fit and healthy as ever before this happened. I need proper testing and treatment, fast.

[monayaballard]

I was diagnosed with Lyme disease in Sept. of 2020. In July of this year (2022), I got a mild case of Covid (I have been vaccinated) and was happy to have minimal symptoms. Two weeks later, my body tanked! I truly thought it was Lyme disease. However, I experienced bouts of tachycardia, severe muscle fatigue, loss of breath when doing tasks and am now experiencing great joint pain and muscle fatigue. What do we do when we have long Covid with a squeeze of Lyme? I work with an amazing functional medicine practitioner and will continue to do so but am concerned about my future. I'm 50...what will this look like when I'm 70? Grateful that Lyme disease is getting the attention it deserves. So many are suffering.