LYME DISEASE AND COVID-19 SURVEY

We need to understand the Burden Of Lyme Disease and other tick-borne illnesses (BOLD) on individuals who have been ill with COVID-19, have taken the COVID-19 vaccine, or have been hesitant to take the COVID-19 vaccine. Below is a short video explaining the BOLD survey.

Let us know your experience – Take The Survey

You are invited to share your experience with Lyme disease if you are at least 12 years of age and if:

  • You have had COVID-19
  • You have had the COVID-19 vaccine
  • You have had neither COVID-19 nor the COVID-19 vaccine

Your experience will help others living with Lyme disease in a COVID-19 Pandemic.

Please contact Dr. Daniel Cameron with any questions or concerns at: dcameron@danielcameronmd.com

Let us know what you think about the Survey

Join the Conversation
(Note: comments are moderated. You will see your comment after it has been reviewed.)

46 Replies to "LYME DISEASE AND COVID-19 SURVEY"

  • Shayla Crowley
    12/01/2021 (9:05 pm)
    Reply

    Hi there, I took your survey. I am 28 years old and I am a veterinary Technician (or I was) and very active individual. I was diagnosed with lyme a few years ago, I had COVID 19 in 2020, and I am now a Long-Hauler. I treated lyme for about 1.5 years, had severe herx reactions and I never seemed to go into remission. I had good days and bad days, sore/stiff muscles and joints, chronic fatigue and various other symptoms. I had COVID 19 in October 2020 and I had a moderate case. I developed severe nerve pain, shortness of breath, lost my sense of taste and smell and was very fatigued. I was treated with an albuterol inhaler and sent home from the ER. After 14 days and quarantine I resumed my normal life. My whole life has changed about 4 months ago. I had a seizure-like episode at work, where I almost passed out, i had tachycardia, blurry vision, confusion. I had to GPS my way home. Since that day I average 1-2 episodes a week. I am unable to speak or write, I feel disconnected from the world. I have no motor function. They last between 10-20 minutes. I was seen by an eye doctor/neurologist and she diagnosed me with typical TBI symptoms, although I have not had any concussions within the last 3 years. I am at a loss. I have been seen by teams of doctors. I believe that COVID reactivated my lyme. I am hopeful that your study can shed light on this mystery illness/chronic condition. My neurologist, cardiologist and PCP agree that I should not burden my body that is already in crisis mode with this “Vaccine” I will not be getting it anytime soon. I find it interesting that on paper they have to recommend the vaccine, but off the record they advise against it. I am now working with a team of COVID recovery doctors to try to treat my constellation of symptoms. That is my story, thank you for reading.

  • M. E. Raines
    11/29/2021 (8:51 pm)
    Reply

    I’ve already participated in the study. I’ve had serious lyme disease for many years, diagnosed as positive by CDC standards in 2005 (the tick bite was in 1988). Last year I went on Disulfiram for ten months. I received my Moderna inoculations in the same period of time that I finally tapered completely off the Disulfiram, which was last April. My symptoms, especially super painful neuropathy and crippling, became heightened several days after the inoculations, and I have never returned back to normal. I’m not sure how much of a role going off DSF played. It is time for me to receive a Covid booster, but I am terrified of getting even worse, since I am almost completely debilitated and by rights should be in a wheelchair (but can’t afford it). I look forward to the results. We need more information about this!

  • Linda
    11/25/2021 (6:18 am)
    Reply

    I found since getting both shots of pfizer I am on antibiotics for lyme desease which I have had to 4 years now I am having problems with walking and all my joints are very sore I find I am very moody at times my lower back is so sore I can not stand very long I do not sleep very well I maybe get 3 to 4 hrs sleep

  • Kayla
    11/03/2021 (6:32 pm)
    Reply

    I had the covid-19 vaccine in October so about 7 months ago. I have never been the same since. I have congenital lyme disease meaning I’ve had it for my whole life. My mom passed it to me through birth also my brother has it too. I am 18 years old and had little symptoms of Lyme before the vaccine. I now 7 months later post vaccine first shot of Moderna still feel numbness in my head and face. Any time I drink alcohol or coffee my twitching gets a lot worse and my face/arm gets numb and very itchy. My brother had the Phizer and is having very similar symptoms to me too. I’ve had vaccines before and never had a problem with them. I think it has to do something with the messenger rna. The MNRA and lyme definitely don’t mix. If you have neurological lyme I don’t recommend getting the vaccine. This is really scary and I don’t know how to make it stop. I really wish I never got the vaccine.

  • Carin
    10/31/2021 (1:04 pm)
    Reply

    Please inform us as soon as possible once you have compiled the data from this survey. Everyday counts as here in Germany the number of covid cases is soaring again.. our fourth wave is well underway.
    One question is….I react strongly to infections with very high fever… 39- 39,5 degrees celcius is normal for me. This is why I am so affraid of Covid. It is my understandning that an overreation of the immune system is also quite dangerous with Corona. Is this true?
    Thank you so much for all your time and effort in helping us Lyme patients…here or abroad. I am originially from New York 😉

    • Dr. Daniel Cameron
      11/01/2021 (8:39 am)
      Reply

      Both a COVID-19 infection and the vaccine can affect the immune system.That makes the decision that much more challenging for everyone. I am most concerned with hospitalization and intubation. I am hoping to release the results soon.

  • Butras G
    09/22/2021 (2:08 pm)
    Reply

    i have completed the survey – where or when can we see the aggregated results ?

    • Dr. Daniel Cameron
      09/22/2021 (2:42 pm)
      Reply

      I am preparing to present the initial results at an ILADS professional conference. I am working on a way to share the results.

      • Michelle Pinzino
        09/30/2021 (12:37 pm)
        Reply

        I’m fighting lyme and have a wbc of 2 and on immunosuppressives and was worried I wouldn’t make any antibodies even if I got the shot. It took me many months to decide risking the side effects with potentially getting Covid which I feel could kill me given my health. Anyway, I did have a horrible reaction and it flared up my MCAS making it hard for me to tolerate eating more than 3-4 foods without a reaction….,AGAIN but…..I would still do it again because this is just a bump in the road. A road I’m still living on.

        • Michelle Pinzino PA-C
          10/20/2021 (6:57 pm)
          Reply

          Update: Flagyl has cured these symptoms for me. I was having bloating, nausea, pain, dysmotility, autonomic dysfunction and pseudoileus after eating, just a couple days after the vaccine. My doctor agreed to let me try Flagyl without knowing exactly what we were treating, however within 24 hours, I could eat normally again, no reactions at all. Upon improving I came across an article about Flagyls anti inflammatory properties especially in Covid. I had elevated IL 10, IL 6 and TNF-a and homocysteine and the paper talks about how this medication lowers those inflammatory markers. It totally was a game changer and more attention needs to be brought to it for long-haulers in my opinion. Hope this information may help someone.

      • Butras G
        10/09/2021 (2:44 pm)
        Reply

        Thank you – Great! – keep us posted

      • Butras G
        10/20/2021 (1:30 pm)
        Reply

        any update on this topic?

        • Dr. Daniel Cameron
          10/20/2021 (1:44 pm)
          Reply

          I am analyzing the first 800 or so individuals who have completed the survey. I am hoping to share these preliminary results.

          I am thankful for the great start. I am encouraging more individuals with Lyme disease to fill out the survey so I can analyze additional questions.

  • Melinda P
    09/17/2021 (11:25 am)
    Reply

    I was worried about getting the vaccine, but work in healthcare and my spouse is high risk for severe illness if he gets COVID. I got my first injection in January and second in February and have had ZERO adverse reactions since 2 days after each. The day after both I was tired and my arm was sore, that was it. I was so relieved to not have terrible side effects and it’s interesting to me that other Lyme surveys show patients with Lyme are having FEWER side effects than the general population! Maybe we’re just so used to pain that the mild discomfort after injection isn’t a big deal. 🙂 My anxiety and mood are much better since getting vaccinated, a result of less worry about contracting COVID, I’m sure. We are still extremely careful, no crowds, masking in public spaces, etc.

    • Dr. Daniel Cameron
      09/17/2021 (12:41 pm)
      Reply

      I am happy the vaccine worked out. Don’t forget to share you experience on my Lyme disease and COVID-19 Survey if you have not already. Here is the link https://danielcameronmd.com/lyme-disease-covid-survey/

      • Melinda P
        09/17/2021 (2:44 pm)
        Reply

        I have already completed the survey. Thanks for the information you share!

      • Michelle Pinzino
        09/30/2021 (12:44 pm)
        Reply

        Dear Dr Cameron
        I filled in the survey and shared my experience about the GI side effect of the pfiezer shot I had, it escalated MCAS to the point I reverted back to only being able to only eat about 4 foods without symptoms. But I wanted to tell you, if you are able to do a study to help any long haulers or post vaccine symptomatic inflammation patients that Flagyl worked for me almost immediately. I am now able to eat again normally. I am a physician Assistant and it felt like the shot was causing a chronic psuedoileus which caused nausea and multiple other symptoms and I just gave it a try and was so happy to get off a liquid diet!! It was a miracle. Hope this information helps and a study can be done at some point if others have similar experiences.
        Thanks-michelle

  • Whitney W, Donhauser
    09/11/2021 (8:57 pm)
    Reply

    I am curious about Covid break through cases. This survey does not seem to address that issue. Our whole family (4 individuals) have all been diagnosed with Lyme over the last 15 years, several times. We have all been vaccinated against Covid-19 with Pfizer. Recently, our 18 year old daughter had a break through Covid case. Was she at higher risk for Covid because of her Lyme disease, which was diagnosed when she was 3 years old?

  • Anne
    09/10/2021 (6:35 pm)
    Reply

    I have been mostly symptom free for about 8 yrs. and quite healthy. since summer began some symptoms have recurred, and the big question is will a COVID shot make me feel worse?

  • michelle langdon jenkins
    08/30/2021 (10:19 pm)
    Reply

    I am extremely terrified to take the vaccine. I have 4 different kinds of lyme and I also have a blood clotting issue. Our school district is mandating that staff get vaccinated or we will have to be tested 3 times a week but I truly don’t think it would be a good idea to get the vaccine. What do you think?

    • Dr. Daniel Cameron
      08/31/2021 (7:52 am)
      Reply

      The only reason we are having this discussion is the severe complications of COVID-19. This Lyme disease and COVID-19 survey will allow individuals with Lyme disease to share their experience with COVID-19 or the COVID-19 vaccine to help with your decision. I would appreciate it if you and anyone you know, even children over age 12 to complete the survey. The survey requires a consent to protect your privacy and to allow the results to be published. https://danielcameronmd.com/lyme-disease-covid-survey/

  • Karen Duffy Tuhacek
    08/29/2021 (4:31 pm)
    Reply

    3 docs said no to vaccine for me. Besides dxed Lyme/co-infections/ lyme dysautonomia/syncope/mass cell.++++
    My gut says no. But in elevators a lot.
    Try to keep distance unable to wear mask for any length of time. Air hunger. Should people like myself with mass cell not take hope we have natural immunity? Just not sure yet!!

    • Dr. Daniel Cameron
      08/30/2021 (8:00 pm)
      Reply

      You are not alone. The severity of COVID-19 for some people makes the decision more difficult.

  • Christiane Monte-Dismuke
    08/18/2021 (7:22 pm)
    Reply

    Dr Cameron,
    I hope you are taking new patients!! Im moving to CT as I am in desperate need of a good Lyme Dr. I thought I was in the clear 12 plus years remission then I got that stupid vaccine and right back to square one!!

    • Dr. Daniel Cameron
      08/19/2021 (3:55 pm)
      Reply

      I am taking new patients. Call my office at 914 666 4665 to make arrangements.

  • Allen M. Abrahams
    08/17/2021 (12:47 pm)
    Reply

    Dr. Cameron,
    I chose the J&J (Jansen) vaccine primarily because it uses relatively established technology that has been tested for years with the flu vaccines. On the plus side was the one and done injection, as I anecdotally noted by crunching some CDC numbers, that the mRNA vaccines had increased probability of adverse reaction, with both shots greater than or equal to that of the one J&J. I decided the J&J would be a lower risk, especially as I was not in the demographic that experienced the greatest number of adverse reactions. Additionally, the government eye was on Jansen to correct a manufacturing issue. So I waited.
    I had no injection site pain, no immediate issues at all. A week later, I experienced what I thought was a Herxheimer reaction like I had during Lyme treatment, as my forearms started getting red spots, but with no fever, pain or other symptoms. The spots itched, my skin became very dry, and the red spots crusted up, in raised callus like patches, even with moisturizer. GP said this wasn’t a Herxheimer.
    We are now in the process of trying to figure out what is happening. For the time being, I am treating with a cortisone cream and I have an upcoming dermatological appointment.
    I will mention is that I had a DNA test done for genetic disease, and it came up with markers for psoriasis. The worst skin issue in the past sixty years has been occasional mild dandruff in a dry winter. My concern is the triggering of dormant and non-expressive genes.

  • Donna
    08/14/2021 (7:02 am)
    Reply

    Thanks Dr. Cameron! I am going to take the survey and share it with others. I took the Pfizer vaccine doses in March/April. My side effects were relatively mild and my anxiety was greatly reduced after the shots. So far so good. Masks, on the other hand, have caused me illness over and over again, and that worries me much more than the vaccine because every time I have to treat a new sinus infection brought on my wearing the mask for long periods I worry about what it might be doing to my PTLD … in fact, I am pretty sure I am either herxing or in a babesia flare as a result of doxy followed by z-pack. I’m not even sure if that’s possible, but it sure is coincidental. Is it possible? Have you seen this?

    • Dr. Daniel Cameron
      08/14/2021 (7:49 am)
      Reply

      I am happy you tolerated the vaccine. Your survey will be helpful to our understanding of the vaccines. I still wear a mask to protect my patients. I find them uncomfortable. Any antibiotic can lead to a flareup. So can stress, diet, alcohol and a concussion.

  • Brian S
    08/13/2021 (2:43 pm)
    Reply

    Got 50% through the survey just now, and the website gave an error: ” CRITICAL ERROR: REDCap server is offline!
    For unknown reasons, REDCap cannot communicate with its database server, which may be offline. Please contact your local REDCap administrator to inform them of this issue immediately. If you are a REDCap administrator, then please see this additional information. We are sorry for any inconvenience. “

    • Dr. Daniel Cameron
      08/14/2021 (7:45 am)
      Reply

      Thanks for sharing. I understand that Redcap sometimes works on their system on Friday evening on some occasions. I will be watching.

  • Joan Grounds
    08/07/2021 (2:21 am)
    Reply

    Dr Cameron,
    I wonder if you can help me. I have Lymes Disease with co infections. I live in Australia where Lymes is not recognised by the government. ( Doctors who treat it are deregistered) I work with a naturopath who is very supportive but I do need to do a great deal of research myself then take it to him for evaluation. The Australian government is pushing vaccination particularly because of the Delta variant. I am in the age group that can only get Astra Zeneca and I am very concerned about that particular vaccine as well as the other MrNA vaccines. After reading your blogs, it is clear to me that the risks for Lymes and the other MnRA vaccines is too great. I would like to know if you have any thoughts on the Astra Zeneca? The pressure to vaccinate is very strong here. From what I have read, I would prefer the Novax.I would be very grateful for your opinion and suggestions.
    Thank you.
    Joan Grounds

    • Dr. Daniel Cameron
      08/08/2021 (8:22 am)
      Reply

      I have walked my patients one on one through the risk and benefits of the vaccine. I have favored the vaccine despite the risks because of my concern with an acute COVID-19 illness or potential for chronic illness. I have seen flare ups. I have readers who have described flare ups. I would appreciate it if you and friends you know complete my Lyme disease and COVID-19 survey so we can better understand the risks from each other. The link to the survey is at https://danielcameronmd.com/lyme-disease-covid-survey/ Most appreciated. I do not have enough information to answer your question on the best vaccine. Perhaps the Survey will help.

  • Jennifer Burns
    08/01/2021 (8:31 pm)
    Reply

    Thank you, Dr. Cameron, for your continued dedication to healing people. And for your intensive research work over the decades, including this survey.
    You have helped me and every member of my family immensely.

  • Colleen Nicholson
    08/01/2021 (11:49 am)
    Reply

    Dr. C,
    Military Lyme’s official stance is that Lyme patients should never get vaccines…especially not the experimental MRNA vaccine.

    • Roberto
      08/11/2021 (4:16 pm)
      Reply

      If considering getting a vaccine are there additional risks when having MCAS besides Lyme and co-infections? Thank you!

    • Maura
      08/12/2021 (3:20 pm)
      Reply

      I actually felt better after having the Moderna Vaccine for about 2 mos. I felt bad the day after the shot but then I felt better after that. It was like my immune system focused on something different but after 2 mos I was back to my crappy Lyme symptoms.

  • Tamara
    07/26/2021 (12:32 pm)
    Reply

    Does anyone think that Lyme disease was an earlier pandemic which was bacterial instead of viral like Covid? I am noticing the Long-Hauler Symptoms are the same/similar for both.

    • Allen M. Abrahams
      08/17/2021 (2:23 pm)
      Reply

      No, not me. I suspect immune system.

    • Gina
      10/24/2021 (7:58 pm)
      Reply

      I feel the same. . 2019 my mother had symptoms of Bartonella, which I had never heard of at the time. But was diagnosed with influenza A and B. She was sick most of 2019. My dog and I finally contracted whatever she had. Almost killed my dog. It did kill the neighbor’s dog after he spent an hour in mom’s house talking with her. He got sick, then His dog got sick with same symptoms of conjunctivitis that my mother had. End of 2019 I kept fighting it off. Beginning of pandemic I was down with it. But I also had a tick bite, never associating the symptoms with the tick bite. I did associate my symptoms with invisible mites I believe to be bird mites. I could not come near my mothers’s house or go in because my symptoms would flare up again with terrible itchy rashes or biting sensations that hurt! Even after her death, her house seems to have these “bugs” in the air , but they have gotten much smaller. My mother just died of “Covid” but the way they described her chest x-ray, sounds like Bartonella to me. I had the Bartonella stretch marks and continue to have other symptoms of all five coinfections. It has all been a mystery but definitely is an endemic here. I cannot walk on dead leaves without getting bit and reinfested with Lyme+ and the symptoms are amazingly similar to Covid symptoms.

  • Rebecca Day
    07/10/2021 (7:19 pm)
    Reply

    I got my second Moderna vaccine on April 6, 2021. About 2/3 wks after I started having dizziness/headaches, rapid heart beat, and an unwell feeling in general. It has only progressed from there and now it has become extreme where I do not leave the house most days. I have been to my GP, (he said he had heard of some strange reactions and did not even try to convince me it was not possible) neurologist, ENT (the full battery of testing). Now I am going to a specialty center to help with the dizziness and balance issues.

  • Laurie
    07/02/2021 (7:57 pm)
    Reply

    Thanks for creating this survey. We Lyme patients need to understand how the vaccine can affect us. I am reluctant to get it… the thought of getting sicker than I already am is a bit overwhelming

    • Luciana
      10/19/2021 (7:53 pm)
      Reply

      Laurie, I felt the same way and my mom pushed me to get it. I have Lyme, mold, babesiosis and long haul covid. The vaccine had few if any side effects for me but I waited for a “good day” to be vaccinated. The thought of having full blown covid again with how I feel is not something I want to experience. My brother, who lives with me, recently tested positive for covid and I’m so thankful I was vaccinated. My symptoms were mild comparatively….vaccines may not fully prevent the disease, but they give your immune system a fighting chance which overall should be better than not having it. Bottom line, we really can’t control if we get covid or not because people can pass it before they know to isolate. We have to do what we can to protect ourselves including vitamins, healthy behaviors and restorative sleep. I could go on….


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