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.)

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

  • Graham Ledbrook
    07/12/2022 (6:56 am)
    Reply

    I caught lyme in October 2019 , After 3 courses of Anti-biotics during 2020 I was happy that the other minor symptons such as hearing loss and eyesight problems and some major joint pains were probably due to my age at 88. I did catch Covid in April 2022 after a visit to see my wifes oncologist in my local hospital, but after 2 weeks I was testing negative. As I was due a Covid booster in April I had to wait a month before having my Covid Booster.I had the Moderna booster on Friday 6th May. I fell asleep during the afternoon of Sunday 8th May and when my wife tried to wake me I was totally paralysed from my neck down. I was sent to my local hospital ER and by Tuesday 10th May I was perfectly OK .Doctors ordered CT and MRI and Xrays of my head and no sign of a stroke. I then started getting the Lyme symptons again so was put on Antibiotics 3 times a day for 28 days, Lyme has been reduced but different symptons now of pains in my legs and feet. .I have been refered to a professor of Neurology because of my complete paralysis and Moderna Vacine

  • Connie
    07/11/2022 (11:32 pm)
    Reply

    What if you had Lyme and then Omicron, the variant. Are you still a candidate to take the survey or is the survey completed?

    • Dr. Daniel Cameron
      07/15/2022 (3:46 pm)
      Reply

      The Survey is still on. There are a few unanswered question. Dr. Daniel Cameron

  • Debra Emig
    03/02/2022 (12:02 am)
    Reply

    Dr.Cameron,
    I just finished taking your survey. Thank you for all your hard work and research you have put into it all.
    Thank you again, God Bless You.

  • Debra Emig
    03/01/2022 (8:39 pm)
    Reply

    I received my 1st vaccine in April 2021. My 2nd vaccine was 3 weeks later in March 2021. I had one issue with the 1st vaccine…the nurse that gave it to me really jammed it in my arm. It was so painful I swear it felt like she hit my bone. My bicep was painful a long time. But I did not have any other reactions, none whatsoever. (2nd vaccine smooth as could be, hardly felt it) Different nurse. In fact I seemed to feel better that spring and summer than I have in years. I was diagnosed with Lyme over 15 yrs ago. I was bedridden for awhile. This was before I knew I had Lyme. I could hardly pull myself up the stairs, my legs felt like concrete. I didn’t know much about Lyme. I remember about 2003 I was feeling funny. Once in a while, I felt foggy, could not concentrate. I kept going to my doctor telling him that something is wrong. Many times. He ran all the blood work, urine, thyroid etc. Everything was fine. For 2 or 3 yes I would still tell him something isn’t right. Then he asked me if I got bit by tick or had a bullseye rash? No…not to my knowledge. He then said ” Well , you don’t have Lyme Disease.” After that I got worse, very weak, my thigh muscles were extremely weak. I had a terrible time climbing 3 flights of stairs were I worked for the first time in 8 yrs. I could almost run up most of the time. I had to stop and rest in-between, also because I had a hard time getting my breath back. And just a few times my heart went crazy fast. I was in good shape at 49. No athlete by all means,but I worked, was a single parent of a very active boy and mowed my grass by push mower(only half an acre). Then I was helping a relative clean out their house. My knee swelled up,that never happened to me ever. Painful. No Lyme diagnosis at that time. Sent to Orthopedic Surgeon after cortisol injections helped a few days then after the 3rd one my knee froze up. So painful I could not walk. They acted like I was a baby. Yes…you walk in a few minutes as the last 2 shots. Well, no I could not. Barely made it out to my car. Sent to another Orthopedic doctor who at that time were about 1 in 2 surgeons I knew of in the state that did partial knee replacements. My first Orthopedic surgeon was excellent but he didn’t do partial knees. He didn’t believe in them and I don’t think he felt I needed a full knee. I know now I DID NOT NEED a new knee! Because it was Lyme !! My knee still hurts after all these yrs. Never healed properly. No one knew why. I’m sorry I’m way off topic, maybe some of what I went through for so many years will help others out there. So I tested very high on Western Blot test. Took Doxy 3 months, herxed with severe leg and feet cramps. Felt much better after Doxy but still out of sorts. Of course changed doctors. Turns out I also had Babesiosis, Bartonella…and developed mycoplasma 3x in as many years. I was treated for everything, more 5han once, like once a year maybe. I think Bartonella got better because some of the symptoms never returned( soles of my feet killed me when walked barefoot just to the bathroom…about 2 months at beginning,never returned in years) I know there are more, I never got anything that looked like stretch marks. The Mycoplasma makes it hard to breathe- air-hunger- is a great description for that. I have been a Lyme long hauler for several years but not as sick as I was at beginning. On with the vaccines..I received Pfizer. As I said I felt good that summer. Oct 26, 2021 I got a fever that kept rising in less than 2 days I could not get out of bed. No one could get me out of bed to the car,I was incoherent. I don’t remember. Paramedics came. Took me to Geisinger Hospital that was one of their smaller hospitals. I did get my own ER room. First IV fluids. Nurse trying to stuff Tylenol down my throat which didn’t work well. She went elsewhere,came back later. I cried the whole 4 hours I was there. Brought in xray machine for lungs. I’m 65 now. Lungs were clear thank Heavens! That was a good thing. I had fever, my whole body was in terrible pain. Even my organs inside were so painful. The doctor came in to tell I had a VERY SERIOUS virus. She never said Covid. Maybe a variant? I was so messed up sick I never thought to ask ,does that mean Covid or what? Later the nurse came in and said I can go home. To call someone to come get me. They couldn’t keep me anyway…there were not enough beds. I do remember saying,” Is this because of that 65 and over thing?”. Ha! She said no. I was to take Tylenol every 6 hours then ibuprofen every 6 hours then switch back to Tylenol and the same on and on until my fever went down. Plus I guess for the pain as well. I could hardly walk to get in a wheel chair to my ride which was right at the exit door. Went home, went to bed, slept mostly for 3 weeks. My husband kept waking me up because he was afraid I would die or something. Hardly ate. He made me. Chicken & Noodle soup. I lived on that for quite awhile. First 3 weeks lost 20 pounds. I had terrible night sweats. Had a very itchy rash across my stomach. Put me in mind of chicken pox. I had chicken pox when I was young anyway. It was not shingles. They were as ALLEN(SEVERAL COMMENTS BEFORE ME) described. I tried cream at first, laid in a warm tub of water everyday to soak the rash. My husband had to get me in and out of tub. Now this was after the 3 weeks in bed. What I we did discover for the rash I would like to share with everyone(even if you don’t include this whole extra long comment Doctor Cameron was I used ” GOLD BOND Medicated Powder on my stomach rash every night for several weeks. And if I woke up in middle of night scratching like crazy…I put more on and rubbed it all over. REALLY REALLY HELPED ME WITH RASH. I never found out what it was but it was little bumps like chicken pox with a little yellow like crust on top. When I woke myself up after a scratching fit, I also saw where I scratched the little crust off they bled…a bit like a pimple…not much.( they were not pimples) So I applied more GOLD Bond over them and that helped so much. Next day I would lay in tub for an hour or so…stayed in bed and repeat every night and day while slowly gaining strength back. I did have severe headaches and VERY SEVERE VERTIGO but it felt like my eyeballs themselves were going round and round not my head as in dizziness. And that hurt plus it happened the most as soon as I laid down on my bed. As soon as my head hit the pillow my vertigo went WILD! What was that all about? I still get a few headaches once in awhile. I’m a lucky person who never gets headaches. I later heard or read that the vaccines last about 6 months. I got Covid 7 months after. I was about to get my booster but I got Covid so I had to wait, but I got it as soon as I could. As far as Covid being the worst flu you ever had, some of my friends that had it said it was nowhere near having a bad flu at all. And they do not have Lyme. I do…and I will tell you all, to me it was certainly not like a flu. I don’t know what it was. But I will say…it felt like severe Lyme. The people that never had Lyme won’t understand, but those of you who have will. It is now March 2022. I am better but I feel my Lyme is acting up. And I am sick and tired of being half sick all the time!!!!!!!

  • Lisa K
    02/28/2022 (5:56 pm)
    Reply

    I was confused with the area re: 3rd COVID Vaccine vs Booster. I had, what I thought was a booster (3rd injection) when the CDC advised those with weakened immune systems and/or those 60+ yrs old, get a 3rd injection as a booster. I have no way of knowing if this was actually a booster of the 3rd vaccine. Hopefully, it can be determined based on the dates. I filled it out as a Booster on the survey. There were several identical choices on a few of the lists. The list of people having COVID choices did not have enough relevant options. I chose Cousin for my nephew and his family, Child for my adult son, Friend for his wife.

  • Massachusetts Lyme Coalition
    02/17/2022 (6:48 pm)
    Reply

    Hi Dr. Cameron,

    Is there any update regarding when and how the preliminary results of this survey will be shared with the Lyme community? As you know, it may help inform decision-making for people with Lyme and their treating physicians.

    Thank you so much for undertaking this endeavor.

    • Dr. Daniel Cameron
      02/18/2022 (8:25 am)
      Reply

      I am hoping to present the first results in the next couple of weeks.

  • Annalisa Walker
    02/16/2022 (5:02 am)
    Reply

    I enjoyed participating in this survey. I believe that having chronic Lyme caused my case of covid to be worse. I had covid in October 2020. Was 7 weeks of feeling like I had mono and overall just felt sick. Had Moderna vaccine first two times and got so sick with fever chills nausea dizzy and stayed in bed for two days. Got Pfizer for booster and only had a sore arm for a day. I have been dealing with either long covid or a flare up of Lyme again. I have been taking low dose naltrexone for a year and had been doing well. It had helped my symptoms a lot. After the vaccines the low dose naltrexone seems to have quit working and I am back to feeling bad. I don’t know if it is a lyme flare or long covid, but I haven’t felt good for months again. I would still get the vaccine. When I had covid in October 2020 I was miserable. I did not have a breakthrough case even though I was around a lot of people who did have covid. I know the vaccine works to prevent hopefully getting it again. My conundrum is why do it feel so bad still? Reactivated Lyme, long haul covid, vaccine? Why does my low dose naltrexone no longer help? Such a mystery. My LLMD is having me get a bunch of blood work done to see what viruses are potentially reactivated and go from there.

  • Bridget
    01/24/2022 (1:01 pm)
    Reply

    I’ve had Lyme and bartonella for years. I got my symptoms almost totally under control a few years back with a Lyme doc, IV treatments and just healthy diet and supplements. My first vaccine was a bit rough for a few days, but I was ill prepared. I needed to hydrate better and just didn’t have what I needed in the house and didn’t feel well enough to go get it. The second vaccine was fine, I was prepared. I really just had a headache. The booster was honestly nothing and I was completely unfazed. All three were PFIZER.

    Flash forward to about two weeks ago when I spent the night with an unvaccinated friend in her most contagious state and I caught covid from her. This is BY FAR worse than the vaccine responses. It was really mild, and I felt better, but I now feel it’s kicking up some things in my system or that I’m going to be a long hauler with headaches and aches/pains. I’m just hoping it’s still early and in a few weeks I will be a-okay.

    I plan to wait a bit and will fill out the survey.

  • Diane Blomgren
    01/15/2022 (10:28 am)
    Reply

    I had no issues after first, second and booster. What’s making me a hot mess is the resurgence of my Neuro Lyme. This is the 5th “ relapse”. I get the same answer/option I have always had. IV Rocephin indefinitely. I can’t go there. I will if I have no other options. I have ZERO feeling in my feet and hands. Often, my gait appears like I’m intoxicated yet I do not drink.

    • Beth Delaney
      01/18/2022 (7:18 pm)
      Reply

      Your neuro Lyme resurgence is from all of those vaccines!

    • Annalisa
      02/16/2022 (5:04 am)
      Reply

      I feel like my neuro lyme is back in full force. I did IM Rocephin for a year. It helped me a lot.

  • Mary Anne
    12/14/2021 (10:34 am)
    Reply

    I just completed the survey, and I have pretty active Lyme/co-infections, etc. going on — although thankfully the most severe phase of my illness was between 2017-2019 (thanks to the miracle of ketamine treatments, which greatly diminished some of my most severe neuro-Lyme symptoms and physical pain/joint swelling), and I pray that I do not ever have to return to that state again. I do not want to dismiss those who have PTSD and fear/anxiety about getting the vaccine. However, I want to be clear that I am someone who attempts to look at all issues from as many angles as possible. The evidence is crystal clear. With rare exceptions, no matter how much you feel that the vaccine is negatively impacting you (thankfully for me, it was temporary for each of the three Pfizer Covid vaccine shots I have received, even if I did feel pretty horrible for two out of the three, for 4-6 days!), 97-99% of those who end up in the hospital with Covid are unvaccinated. It is even more rare to die from the impact of Covid, if you are vaccinated. As Dr. Horowitz has said multiple times (I am paraphrasing) — he wants people to be alive, in order to help treat their Lyme and co-infections. He strongly recommends the MRNA Covid vaccines to his patients, even though he is not always a vaccine supporter. What I have discovered in my Utah Lyme community (and among those with chronic illness in general), is that the fear of the vaccine seems to be a major factor in how it impacts folks. Among my friends with Lyme, etc. who have chosen not to get vaccinated, they have each suffered greatly with Covid infections (one friend just barely became infected, so I do not know the long-term effects yet), and two of them have continued to suffer with long-haulers symptoms. It may be my OCD with mask-wearing, etc. and simple good fortune that I have not even tested positive for Covid or had even so much as a cold during the pandemic — even after being exposed to my daughter before I was boosted, when she had a mild breakthrough case of the virus . . . but I also feel quite secure with the knowledge the vaccines keep almost everyone out of the hospital — at least regarding Covid. Oh, and I am confident that lots of my fantastically absorbable L-glutathione supplement, as well as liposomal Vitamin C, turmeric, ginger, and other immune-boosting supplements have made a difference!

  • Marjorie M Holland
    12/10/2021 (5:04 pm)
    Reply

    Until I read other comments about the relation between COVID-19 and Lyme, I had not realized that my getting the Pfizer booster in September could have prompted my aching joints. I have been having a lot of trouble getting around this Fall, but the joint pain did not start until after I had my COVID booster. I have also had a nasty rash this Fall, which might have been triggered by the booster.

  • 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.

    • Lucas Farmer
      01/05/2022 (1:33 pm)
      Reply

      Hi Shayla,

      Reading these comments and just wanted to say stay strong! I currently have a TBI, so whether or not your symptoms are from TBI or Lime – I feel for you.

      Keep your head, there is always light at the end of the tunnel!

  • 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.

    • Joyce Cacchione
      01/23/2022 (2:10 am)
      Reply

      Hi Kayla.
      I’m sorry to hear about what you are going through. I’ve had Lyme and co-infections for 20 years now and have been through hell and back many times. Over these years I have learned that the best thing you can do for yourself is to lead as holistic a lifestyle as you can. This means no gluten or dairy. No sugar. Just healthy foods that aren’t processed. If you can afford it, try to buy organic. Get enough sleep and moderate exercise when you are able. Drink enough clean water throughout the day. Stay mentally positive. Dr Marty Ross is a Lyme Specialist in Seattle WA and he has an excellent website offering a lot of information that will help you.
      Re the vax I know my body is extremely sensitive to all drugs so I opted out. BUT I work very hard to stay healthy by following the above lifestyle because I know that when/if I get rundown, I go through what you are experiencing right now.
      I’m not sure how this site works but if there is a way to connect, I’m more than happy to share more info. I hope by the time you read this, you are doing better.
      I will keep you and everyone here in prayer. You can lead a fairly normal life if given the right treatment. There are no magic pills and any doctor promising that should be avoided at all costs. Best to you. Joyce

  • 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.

        • Michelle pinzino
          12/12/2021 (7:12 am)
          Reply

          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7114714/#idm140683899246848title

          Here is a journal article about Flagyl and Covid 19, it should be looked at for post treatment lyme, ots helped me so much.

  • 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.

    • Debra Emig
      03/02/2022 (12:53 am)
      Reply

      I am replying to Allen A. , I had a rash that I think was the same as you described. I tired everything. My husband came home with GOLD Bond Medicated Powder. It really really helped me. I covered my stomach every night before bedtime. If I woke up it would itch so much I would scratch it until bled, it would drive me crazy! I would put more of the powder on again so I could fall back to sleep. Next day soak in tub. Then use a little powder. At bedtime repeat…this went on for a few weeks maybe more, but that GOLD Bond worked so well for the itching and night sweats I couldn’t believe it. Maybe by now your doctor has helped you. The powder comes in ugly mustared color yellow. Just like mustard. I hope you are feeling better by now.

  • 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.

    • Kira
      12/19/2021 (9:03 pm)
      Reply

      Wow. I didn’t expect to see another Australian here. I live in Brisbane and contracted Lyme’s in Germany 2019. I am having so much trouble getting help and treatment. My excellent GP keeps referring me to Rheumatologists for help, but they either ignore or refuse the referral. Even with my scans and bloods. The past year I’ve gotten reeeeally sick and am finally being treated with Doxycycline. I am terrified of getting Covid. I am terrified of the unapproved vaccines. I idea of getting sicker than I’ve already been terrifies me. My mental health is suffering greatly. I hate that our government is allowed to push us into unapproved vaccines like this.

  • 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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