Call for your appointment today 914-666-4665 | Mt. Kisco, New York
by Daniel J. Cameron, MD MPH
In the article, published in the journal Clinical Infectious Diseases, Pavletic, from the National Institute of Mental Health, reports “two cases of false positive Epstein-Barr virus (EBV) serologies in early-disseminated Lyme disease.”
In the first case, a 16-year-old male from Virginia developed fatigue, myalgias and three brief episodes of fevers over an 18-day period. He was diagnosed with acute infectious mononucleosis based on a positive viral capsid antigen (VCA) IgM and negative VCA IgG.
It was not until 17 days later with the onset of multiple erythematous rashes and right-sided peripheral facial nerve palsy that doctors diagnosed the young man with Lyme disease. Laboratory evaluation revealed a positive C6 peptide ELISA index of 6.02 and a positive IgM immunoblot. He was prescribed a 4-week course of doxycycline and recovered.
“Repeat VCA IgG, VCA IgM and EBNA were negative, indicating that the initial VCA IgM was falsely positive,” according to Pavletic.
In the second case, an avid biker from Maryland presented with a six-day history of fatigue, fever, myalgias and headache. Lyme disease was diagnosed the next day based on multiple erythematous rashes. Lyme serologies were positive by ELISA, IgG and IgM immunoblots.
Twelve days into her illness she tested positive for mononucleosis with a positive VCA IgM, VCA IgG, EBV early antigen, EBNA IgG, and positive monospot.
The fever resolved and the rashes faded with a 21-day prescription of doxycycline. The recovery was complicated by a right upper trunk brachial plexopathy. “The pain resolved and the weakness improved over the next six months,” according to Pavletic.
“Three and a half years later, repeat VCA IgG and EBNA were positive, and VCA IgM was negative.”
According to the authors, both cases were initially misdiagnosed. “Here we present two cases where early manifestations of Lyme disease were initially misdiagnosed as acute EBV infection due to positive VCA IgM results.”
The authors touched on the difficulties interpreting acute mononucleosis testing. “While isolated VCA IgM may indicate early acute mononucleosis, the test can be nonspecific, especially when the likelihood of acute EBV infection is low.” Pavletic adds, “Immune activation with other pathogens can also result in a false positive VCA IgM.”
The second case was difficult to interpret given the positive monspot, heterophile and VCA IgM tests. “In this case, we cannot exclude that the positive VCA IgM could be due to subclinical EBV reactivation, which has little clinical relevance in immunocompetent individuals,” states Pavletic, adding, “Heterophile antibody tests are known to have false positives due to acute infections, autoimmune diseases and cancer.”
In practice, Lyme disease and mononucleosis are common conditions that share similar symptoms. The authors’ two cases remind the reader of the need to consider Lyme disease even if initial serologies suggest mono.
References:
- Pavletic AJ, Marques AR. Clin Infect Dis. 2017 Apr 4. doi: 10.1093/cid/cix298.
Related Posts
3 weeks after a tick bite, I went to the doctor with fever, aches, chills, joint pain and exhaustion. ELISA came back negative but the MonoSpot lit up like a christmas tree. For the next 5 years I was told I had Post Mononucleosis Syndrome, Fibromyalgia, MS, Cancer, Depression… I was able to find an LLMD through ILADS.org who ran a Western Blot among other tests. They came back postive for Lyme and Babesia. I’m now going on my 9th month of treatment but I’ll be living with the damage for the rest of my life.
I always wondered if my EBV diagnosis when I was 16 could have been Lyme’s, since, it was so severe I was sick for years and my fatigue, neurological problems continued up to and have continued thru & after I diagnosed w Lyme’s and co-infections at age 35.
That sounds exactly like me I was finally diagnosed yesterday with Lyme…as well as Babesia, Mono, Candida and numerous other things…i missed the last month of 7th grade due to mono???? And my physical and mental health continued to decrease…i wonder if it was Lyme the entire time…We were ALWAYS outside…sports camping playing…..i feel so overwhelmed
I am sorry to her you are overwhelmed. It can be hard to sort out when Lyme disease starts when other common illnesses are present.
My son approximately 9 years ago tested positive for mono & strep in June of that year. After a month he was better, but close to September started screaming his legs and head hurt so badly. We kept going to doctors whom kept telling us he didn’t have mono bad enough or long enough so it was a recurrence. Finally a Nurse Practitioner tested him for Lymes and it came back positive. He has been exhausted sometimes sleeping 12 hours or more a day ever since. Funny because when he was initially diagnosed with mono he barely slept more than 8 hours a day. We were told that our extremely healthy young teen had mono and lymes in the same summer, but given the exhaustion he usually has as well as body aches he complains of often (for a healthy slender 21 year old) I always wonder if something is up with those past diagnosis.
It can be difficult to recognize Lyme disease if a child had Mono. It can also be more difficult to treat Lyme disease if there are delays. It may be the infection or coinfections have not resolved.
So interesting! My daughter is 9 and had tests run through IGenex. Showed ++ on 41 band of IgG and IgM but gave a negative overall result. Doctor tested her for EBV and it came back positive. She has severe joint pain, tummy aches, fatigue, weight loss, and random fevers on occasion. When I asked him what to do with the EBV result, he said “Lots of rest.” He assured me she did not have Lyme and that she has had EBV for “quite some time.” Her symptoms have been going on for 18 months. No known tick bite but she did have lice right before symptoms started.
It would be reasonable to revisit the cause of symptoms beyond 6 weeks even if the EBV were well documented. It is also possible someone can have EBV and a tick borne illness since they are common in children.
Not all doctors are correct and when it comes to our children we know what is right and a lot of us go by our gut feeling because we know our children better then a 5 minute exam and a test or two. I pray you don’t accept the doctor’s answer and demand she be retested by another facility or by a doctor specializing in Lyme’s Disease. 18 months of symptoms is way too long for your little girl! Do not stop testing or seeing doctor after doctor until she is diagnosed. I wish you and your family the best and I will keep your daughter in my prayer’s. Anna
My daughter’s Ilad said the sicker or more chronic the Lyme disease the harder it is to test positive. Her IGenex test came back inconclusive for Lyme but positive for Babesio and other coinfections . Her blood was also sent to a lab in Germany where the Lyme was positive along with the coinfections. She also tested positive for EBV. She now has Chest port and receiving Iv antibiotics but improving.
Did the test show #31 or even # 34. If #31 that is staph aureus USA strain 300, potentially USA strain 252. # 34 is a deeper infection. These two go together and favor lung and brain. #34 has elastic type protein that goes to brain an lung as it prefers higher oxygen levels.
find out the other numbers. # 31 is staph aureus bacteria which is opsA and is USA 300 strain. Possibly even USA strain 252. # 34 (opsB)is also a deeper infection that goes together with the #31. #41 is the flagella and not necessarily a tick spirochete. Staph aureus is a spirochete too. Get the Igenex numbers. The mentioned #31 and #34 were like eliminated or manipulated by the CDC after the 2 bacteria (mycoplasma and chlamydophila C pneumonia) were accidently found to be bacteria. The smallest known bacteria to this day. The CDC does not want people to know that water contamination is the root of all inflammatory diseases. Yes it activates a lot of viruses. The lyme testing was changed after finding those viruses were found to be bacteria. It is easy to find info on the meaning of the numbers. Although the staph # 31 is not talked about nor made public. We all know why. SO to summarize. it is E coli and also being injected through vaccinations.
I’m 14 and my mom has severe late stage lyme disease and the epstein barr count was off the charts. She is 46 and has had lyme disease since she was in 7th grade. She is really depressed all the time and saying that she just wants to die. She hasn’t cooked in months and has quit her job. She is really sick and tired and her joints hurt. I want to try to help her get treatment but I don’t know how or what to do. I want to get a job to help but I don’t know where anyone would hire someone who is only 14. Any advice?
I’m so sorry to hear your mom is sick. Lyme is difficult for everyone in the family. It took me 8 years to get to remission, and even though I relapse regularly, I have managed to keep things under control and go back to a “regular” life. So there is hope. The trick is to find a Lyme-literate doctor and be on the right mix of medication for your mom’s individual case. Recently, Disulfiram (a drug originally developed for alcoholism) has been proven to eradicate [chronic] Lyme. There’s a doctor in NY who has had over 90% of success with it. Scientist have also discovered a few months ago that chronic Lyme is real, finding Lyme protein in the brain of patients with chronic Lyme. According to statistics, 20% of Lyme patients get chronic Lyme. Nobody knows why. But now that its existence has been proven, maybe Main-Stream Medicine is going to concentrate on treating it vs. campaigning against patients and doctors who treat it. Meanwhile, the biggest support you can give your mom is to believe in her disease.
It takes a team beginning with a solid proactive Primary Care Physician (PCP) along with Infectious Disease to address each system affected be it Cardiology, Neurology, Rheumatomology. Persist with referrals for assessment and potential treatment. If Arthritis, Lupus, or other illness is part or a result of the discovery then she may be eligible for federal and state disability benefits to cover medical and other financial support especiallyif shes worked 10 years or more SSDI seek a lawyer who could gat a case manager and process on application going. Be her best advocate to seek care and persist. Mental health is important with support most helpful coping with illness stress of it all. Good looking out for your Mom.
Interesting indeed. I have an Igenex IgM result with 31+, 41++ and 45+ And have been told I am negative for Lyme disease. Of course that is CDC negative. I still have unbelievable fatigue and joint pain that is nearly unbearable 24 hours a day. The fact that I live in NY makes it that much more difficult. No one seems to want to treat this and all I want is to feel better.
#31 is staph aureus bacteria. More or less contaminated water. # 41 is the spirochete (not necessarily Lyme). # 45 I believe is osteomyelitis as I have that # as a previous infection/together with # 30 as a European strain. Yes I got osteomyelitis as a child after getting the BCG vaccine in France. Current infection is for me #31, #34 and # 41. This is chlamydophila C pneumonia from staph aureus infection. #34 is a deeper infection of lung and yes the infection affected my brain. This staph bacteria favors higher oxygen level. The #34 is a deeper fungal infection with elastic type protein production. It is possible you have bone infection as osteopenia which I have too. If I was you I would get tested for all mycoplasma and chlamydiaphila C pneumonia ( under chlamydia tests). Do not freak out this one is not a sexually transmitted disease although your kids will have the disease too because it is also contagious and transmitted to offsprings.
Mono at age 18. Lyme and Mono at age 55 and early onset Alzheimer’s symptoms at age 55. Lyme test was positive and I have been recovering my health since 2012. There are no more symptoms of early onset Alzheimer’s and I am grateful that my family doctor, at the time, was able to prescribe the right antibiotics for the necessary time to get me healed. I have also changed my diet, exercise and lifestyle around to be healthier, because thanks to Lyme and Mono, I can no longer take a break from staying on top of my health, or it all might come back
What antibiotic and how long were you on it?
Each case is different. The treatment depends in part on the response.
38 years ago while working as a RN I became so totally exhausted to the point that I could barely get out of bed and had to sleep. I was a very healthy active woman at 26 years old. The lab called me and first told me I had mono then, that I was pregnant. I was very happy since we were planning to have a baby, our first of two daughters 13 months apart. I was also happy that there were two “reasons” why I was completely exhausted yet I still felt I was TOO exhausted. Not until 11 years later after I had a huge bulls eye rash summer of 1987 at age 37 did I begin to feel even more anxious and irritable and depressed. I remembered I began having anxiety out of the blue when I had “mono”. Unfortunately back then I didn’t know about Lyme disease etc. Same year our younger daughter at 9 years old began to get very ill. Nightmare time truly began. We took her to countless Dr’s. Despite her constant painful pressure headaches, knees being so painful it made it almost impossible for her to walk and only wanting to sleep we were told there was nothing wrong physically with our bright happy daughter who loved school. Finally we found the life saving neurologist who diagnosed our daughter with Lyme disease. A few days before we had our first appointment with this angel Dr our daughter complained that her vision was getting “fuzzy”. She was hospitalized immediately, IV antibiotics began and our local pediatrician agreed that our daughter have a lumbar puncture and that she’d work with our LLMD/neurologist who saved our daughter’s life. Our daughter had pseudo-tumor cerebri and papilledema. She was treated aggressively for a year, IV then orals. Our daughter got better. Fast forward, I began to have more symptoms and 7 years after my bulls eye rash and deathly ill I was diagnosed with Lyme disease. Our other daughter got very sick at 17, Lyme again and another Picc line etc. My husband also got sick in his early 40’s. Picc line #3 and long term treatment as well.
My family seemed to feel much better and were able to resume their lives. I was so grateful. But I didn’t. After initially feeling much better with treatment I totally crashed when treatment ended. I got my first Picc line. Not until another several years was I diagnosed with WA-1 babesiosis, erlichiosis, mycoplasma HHV 6/8 by a well known LLMD. I’ve been extremely sick (intractable cranial nerve pain, had vegetations aortic valve, SPECT severe hypoperfusion both cortical hemispheres, severe monoparesis left side and have been treatment resistant but am doing better. Our grandson now 6 got sick when he was 2. Lyme disease again. I’ve heard about having a positive mono test but it’s Lyme disease. Thinking back to my positive mono lab when also told I was pregnant 38 years ago and the anxiety depression and irritability that came out of the blue then makes me wonder if I had Lyme then before my bulls eye rash 11 years later.
Thanks for sharing everyone. I gave birth 17 months ago and kept thinking I felt so tired from the new house, new baby and work. Never once did i think I was sick. Just always tired. Then I got dizzy spells but I had suffered with migraines for three-four years before my daughter so I assumed this was my body reacting to migraines (even though I got those in check now). I went back to my naturopathic doctor who helped with the Migraines and she did a full work up. Same as she had done in 2015 before I got pregnant and when I went off the migraine drugs. Somewhere between then and now I had mono and I have Lyme disease. I’ve been seeing a cardiologist because my body feels like it will explode at times (literal heart palpitations) and so far everything is looking good. Yet now I have an irregular heartbeat that I didn’t have before. Do to the mono? Because the Lyme was just diagnosed and I’m told I’m in the early stage (thankfully) and have been put on meds for it. Dizzy spells? If not from the Lyme than what? This is all so crazy to me. I was a perfectly healthy 35 year old before I got pregnant. Yes I had migraines but nothing else bothered me. I worked full time and ran a side business. I had so much energy. And I’ve been chalking this up to motherhood prior but I don’t think that’s it. What scares me most is now I fall asleep randomly. I don’t even realize im falling asleep until I wake up scared because I do not know when it occurred. Between the dizzy spells, the heartbeat and the crazy sleeping I’ve been so scared. I just want to know how to fix it all so I can be around for my daughter. I waited to have her until I was ready and now that I am I feel like my health is controlling my life.
Thanks for sharing your story. It is worth looking past mono.
So many of the stories could be mine. I got sick in 1977 or 1978 but did not understand what the 1st symptoms meant. SO 37 years later I am able to recall as my mind has returned due to being treated for Lyme starting in 2016. 2015 was a hell of a year with heart palpitations, pains, pins and needles and so much more. As getting better (at times feeling worse) symptoms emerged. The saying is that the first symptom you had is the last one to go away. Well I started to have shortness of breath, sneezing and others. Asked to get tested for mycoplasma and I tested pos for chlamydophila C pneumonia. Although identified as Lyme this one is NOT A TICK based disease but spread from person to person. My mind returned for a 25 year absence. 1977 or 78 I had an ear infection (only have had one in my entire life/felt like a funnel, then a sore lung that eventually went away. SO decades of cysts, skin issues (job syndrome) and mental health issues I was able to identify that staph aureus from water contamination is the root. Husband (prior to marriage), all his family members with lots of issues/deaths. Area the same lots of lyme/cancers/pneumonia (including many family members). A dr in that Midwest are (MN) even stated to another family member you do not need a tick bite to get Lyme. That is true because all insects can pass it and also people are infecting each others. The chlamydophila C pneumonia that I have is caused by staph aureus bacteria (#31 which is opsA). #34 is the deeper infection (opsB) that favors the lung and brain. Believe me I had my share of that in the past. # 41 is the spirochete (not necessarily Lyme). Now you know all these brain diseases origin. Yes MS is #2 on this too and so is Alzheimer, lupus, and so many others. SO I have a systemic infection (even validated by Garth Nicholson) and totally no tick involved. I do not think I knew tick existed in 1977. The USA 300 strain is the staph aureus #31. Mine is possibly USA 252 and goes with #34. Yes methicillin resistant bacteria and yes # 31 has biofilm.
Two weeks ago my arm, chest, and hands started to hurt and I noticed clusters of puss pimple like rashes on the same right arm and palm. In a few days the pain was so awful I ended up in the then emergency room. I am a 54-year-old mother of 4 and I have never known such pain. My right knee started to hurt. I used a cane most days. I have been tested for everything including STDs and parvo. I have also developed vertigo. The only thing that has come back positive is mono. What do I do? This is no way to live considering I was hiking up to 14 miles a day just 1 year ago. I had tick tests and they were also neg. Please help
I am sorry to hear you are ill. It sounds as if the doctors have been working on finding an answer. The All Things Lyme Blog reminds based on a review of the literature reminds us as doctors that sometimes a tick borne illness may end up a factor.
Consider also right-sided body shingles, VZV. Interesting that some cases of Lyme have been followed by Varicella zoster virus (shingles, reactivated chicken pox virus) blocks of rash within the same nerve distribution, the same dermatome, as the tick bite. Perhaps the arachnid / tick bite activated VZV usually latent in the spinal column to erupt in the limbs peripherally?
Good question. We have a lot to learn.
I got lyme from a spider bite and so did the NP who’s treating me. (She came from a rheumatology practice and left because she didn’t agree with their diagnosis and treatment protocols.)
Wow, this is an informative article and I appreciate the responses from your readers as well. Based on my incapacitating fatigue, my Nurse Practioner had me tested for EBV when I was getting labs to check my thyroid levels. Upon receiving the news that I was having a severe EBV reactivation episode, I asked to be tested for CMV and for Lyme. CMV was negative, but I was confirmed to have Lyme (this was on 7/5/2017). I had been so ill that I had to resign from my job in mid-June and have not been able to work. I was referred to a LLMD and had to wait several weeks to get in to see him. Within the week, I began IV treatments to start my fight to regain my strength and health. This is an exhausting journey – physically, spiritually, emotionally and financially. Just in the last 3 days, I have begun to see little improvements in how I feel. This gives me hope. Hope that I will get my joy, my energy and my life back from my complexities of conditions.
So my son had mono in early 2015. He had a very bad case that was undiagnosed because he didn’t have sore throat or swollen lymph nodes, just crazy fever, drenching sweats for 9 days and fatigue, which doctors ignored. He got sort of better, played basketball and wound up in the hospital where they finally diagnosed him with mono after a positive monospot, atypical lymphocytes =31, and a very enlarged spleen (19cm). He was very sick with fevers for another two weeks did get the awful sore throat and lost 20 pounds. He’s never been well since and seems to always have something wrong going on… In the fall of his freshman year (2016), he suffered a concussion, from which he recovered by Christmas break. Since then, he has had lymphangitis in his arm, eustachian tub dysfunction, a sinus infection, two very severe febrile episodes that I could have sworn was mono all over again. Sometime in February when he had the sinus infection and eustachian tube dysfunction he became dizzy, unable to focus, foggy, couldn’t read with overall clogged feeling in the head and tired. We found out recently that he has a vision/vestibular saccades issue. We have been going down the road that he has post concussion syndrome causing the dizziness and have been to ENT to check for peripheral vestibular problem, MRI, PT, Chiro, and vestibular rehab. It’s never-ending. To rule everything out, he has also been tested for lyme and are awaiting the results. In the meantime we got back EBV tests that showed EBV EA at 6x the norm and VCA IGg 10x the norm. We’ve been told he has reactivated mono. Can lyme cause both of those tests to be elevated and can lyme cause problems with saccades and make him unable to focus? Has mono been reactivating over and over again or is it possibly been lyme all this time? Can a concussion bring out lyme or EBV? At my wits end with this…
I am sorry to hear your son remains ill. EBV titer can be hard to interpret if they are elevated. It is difficult to tell the difference between chronic fatigue, Lyme and a concussion. I have seen Lyme disease cases that have been difficult to identify since they started with mono, an elevated EBV or concussion. I would prefer a tick borne illness evaluation be included even if the tests are negative.
Good Afternoon,
I was recently diagnosed with mono- EBV Ab VCA, IgG = 559.0 on 9-21-17 and tested negative for Lyme total An test/Reflex-lyme IgG/IgM Ab= <.91 on 8-9-17. I am still having problems and I'm very frustrated and worried that my diagnosis is wrong. I would like to know where everyone was finally diagnosed with Lyme's? Or what steps I should take next? Currently I'm seeing my general practitioner.
Thank you for your help!!
Both EBV and tick borne illnesses are common. It is reasonable in practice look a second time at a tick borne infection if the illness is atypical or persists beyond the 4 6o 6 weeks typical of mono.
I dont understand I was tested in 2009 2 different times and my Elisa-Lyme reactive was high positive both times…but western Igg and Igm were negative..with comment
Antibodies to less than 2 of 3 significant B.burgdorfebe. proteins detected additional specimen should be submitted in 2-4 weeks..
Rheumatoid factor was
20.0 normal 0.0-20.0
I had all lyme symptoms for 2 yrs after camping tripin 2007…in 2012 high ebv tilters? Also get flu like symptoms, though I was diagnosed fibromyalgia and chronic fatigue after lyme was negative. I have also been diagnosed Anterior Pituitary disorder..migraines, and now no false tb skin test..in 2007 , myalgia and Myostitis, Joint pain, and hearing loss due to chronic ear infection…Perineurophy.
its all the cormorbid illnesses, symptoms,that drive me crazy.
I don’t know if I should be tested a 3rd time? Is it to late to treat? Been 10 years?
Why would elisa/reflex be high positive both times and western be negative?
I wish I could find some answers..
The tick borne tests leave something to be desired. Your doctor may have to use clinical judgment rather than a test if you remain ill without another answer.
Never too late. for me 37 years untreated. Do not go by the regular offered testing. Too many numbers were purposefully eliminated as too many people would test pos. This occurred in 1994 after 2 viruses were determined to be bacteria. Get the IGENEX test that gives the numbers that you can evaluate and research yourself too. CDC and many others do not want people to get diagnosed to start out with. You have to be your own advocate. DO NOT RELY ON TRADITIONAL MEDECINE.
My daughter, 13 years old now, was recently diagnosed with mono after high fever and swollen glands for weeks at a time. 3 summers ago she was diagnosed with lyme after coming home from summer camp with muscle and joint aches, severe weakness and a bulls eye rash. After a day of docyclone, she threw up and it threw her into a long term panic attacks for the fear of throwing up again. After therapy. After the recent diagnosis of mono, I insisted the Dr to run the lyme test while they were running the other levels after coming across Dr. Cameron’s website. It is positive as well. I am so torn if we should treat her for lyme again since her past experience was so tramatic or if it could be a false positive.
Doxycycline can be hard on the stomach even if she takes it with food. It also may have been a Herxheimer reaction where the symptoms get worse before they get better. There are other antibiotics that she may tolerate. It would be reasonable to include a tick borne illness in her evaluation if she remains ill.
When I finally tested positive for lyme in 2010 I also tested positive for EBV
I read mixed rewiews regarding the use of antibiotics for chronic lyme. Any one have experience using long-term antibitotics?
Yes I am. I personally do not believe you can get better without some. The biofilm is key in killing this smart and stubborn bacteria. Must also use supplements, healthy eating and so much more. There is no one simple cure it is a combination of lots including detoxing like crazy. I know too many that are on herbs only and they so not seem to get better. I do know one that did but I think it is before she caught it right away. How long before starting treatment is the key. I knew mine needed to include antibiotics as it has been decades.
When I was 20 I was diagnosed with mono. The pediatrician said it was the worst case he had ever seen. I could barely get out of bed for a month. After that could no longer stay awake late at night like I was accustomed to. In my early 20’s I developed arthritic symptoms. I came to accept that my joints would always hurt. In my 30’s although I seemed otherwise healthy, I could not kneel down to play with my kids. In my 40’s I was diagnosed with Lyme. I had all sorts of neurological problems including not being able to walk up stairs, when i regularly could jog up several flights. I developed breathing problems and heart problems. I was in the ER with SVT and developed pretty severe anxiety. After being treated with oral antibiotics (mostly doxycylcline) for nine months, not only have all these problems cleared up, but the arthritis that started in my early 20’s also went away!
Interesting blog– I’ve never made that link, although like others posting here, I’ve had both mono and Lyme/Babesia. When I was a first-year student in college, my roommate and her boyfriend both came down with mono. I wasn’t surprised when a couple of weeks later I came down with something awful: 10 days of drenching night sweats, 103-104 fever, extreme muscle weakness. But I tested negative for mono. A few months later, a circular rash appeared on the back of my thigh: this time the doctor told me it was ringworm, and sent me home with a fungicide cream. The circular rash continued to grow until it stretched from knee to top of my thigh, and took 7 months to go away. The following year I began having painful heart palpitations, I had extreme difficulty breathing, debilitating panic attacks, and was suffering from ‘tendinitis’ in my elbows, my knees, my shoulders. No testing done, no explanations given. Fast forward to 1997: between 1997 and 2000 we had three children. The first had and still has difficulty breathing, with unexplained seizures and temporary paralysis on one side of his body at 8 years; the second had and still has difficulty breathing, Asperger’s as well as intense social phobia and at the age of 12 became increasingly violent with bipolar tendencies; he was forcibly ejected from the school system and was on his way into the judicial system when in 2014 he was diagnosed with Lyme, Babesia, mono and strep (positive blood tests). Our youngest became ill at about the same time, tested positive for mono, but negative for Lyme and Babesia. I was also tested as I was very ill at this point: now I was positive for mono, as well as for Babesia and clinically for Lyme. It’s now been six years and all I can say is that these diseases and their after-effects have destroyed my two youngest children’s lives.
My All Things Lyme Blog series, book, and live #LymeHangout should encourage a dialogue. Thanks for sharing your challenges.
How does this work, since we all know that the OspA that is released by the spirochetes damages the immune system and allows all kinds of other pathogens to reactivate?
The Marques paper talks about false positive Epstein Barr serology but many believe outer surface protein A of the Borrelia spirochete causes immunosuppression for the following reasons…
“Spirochetes disseminate to the lymph nodes, bone marrow, spleen and brain within a week of infection [1]. Lymph node germinal centers, where B cells are supposed to mature and be assigned an immune system function, are rendered incompetent [2] “B-cell AIDS”
1.
http://JOURNALS.PLOS.ORG/PLOSPATHOGENS/ARTICLE?ID=10.1371/JOURNAL.PPAT.1002066
2. http://JOURNALS.PLOS.ORG/PLOSPATHOGENS/ARTICLE?ID=10.1371/JOURNAL.PPAT.1002066
CARL TUTTLE
LYME ENDEMIC HUDSON, NH
The Marques paper talks about false positive Epstein Barr serology but many believe outer surface protein A of the Borrelia spirochete causes immunosuppression for the following reasons…
“Spirochetes disseminate to the lymph nodes, bone marrow, spleen and brain within a week of infection [1]. Lymph node germinal centers, where B cells are supposed to mature and be assigned an immune system function, are rendered incompetent [2] “B-cell AIDS”
(1) https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1002066
(2) https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976
I truly believe that Lyme disease is immunosuppressive allowing latent viruses to rear their ugly heads and the positive EBV tests in the Marques case studies were reactivated infection as 90% of all Americans have been exposed to this virus but as you know, a healthy immune system keeps Epstein–Barr in check.
It is well established that chronic Epstein–Barr virus can cause lymphoma and there is no disagreement within the medical community. I often tested positive for chronic EBV during the eight years treating chronic Lyme. Four years ago I had another tick bite (deer tick) in the right upper thigh area. Shortly thereafter the lymph node adjacent to that bite began to swell. All nodes swelled on the right side of the body followed by the left side and the swelling continued. A year later I was diagnosed with follicular lymphoma.
Search Pubmed for: “Borrelia lymphoma”
Carl Tuttle
Lyme Endemic Hudson, NH
is it possible to have mono and Lyme disease? my daughter is 14 and was told by her dr. She has Lyme disease, mono, and her gallbladder isn’t working if anyone can give me info please let me know
Some of my patients have had both. In some cases, Lyme disease was discovered when the symptoms of mono resolved.
Hi everyone, it’s Rita Shaw again, I’m really confused. Like I said 3 not 2 Elisa came back high positive, 1.11, 1.25, 1.43
But all western blot negative-Dr’s were shocked because I had all the symptom of Lyme, later test show high postive, ebna-Igg& vca-Igg 2006 , EBV, though clearly symptomatic, blood lab thought to be a passed on maternal infection?
At 14, I was hospitalized for severely high fever, enlarged spleen, and liver?( And always had history since baby of tonsillitis (removed at 2)strep, bronchitis, pneumonia, laryngitis, swollen lymph nodes, etc, every years once or more.ever since) in 2006- I caught
severe mrsa infection from work, also along with this, I didn’t know ..until this yr when asked for copies medical records, also 2006- 3 weeks after I had caught mrsa, and still fighting it, they protein in urine several times, went for sonogram of kidneys. Small white kidneys with unknown pathological lesion in right kidney? Cat scan recommended, not done) ( I knew I had something because dark bubbly, foamy urine alot over years) but drs never said nothing, also diagnosed same time
Chronic glomerulonephritis kidney disease.? I was shocked because my egfr-=60. But I’ve been dehydrating since 2006, at least once a year, now my vision is horrible, I’m low on electrolytes and vitamins, Periherial neuropathy. Emg showed slowing of muscles, anterior pituitary disorder/ hypopituitism which I assumes was car accident tbi in 2005
But on NibH Site” It says Periherial neuropathy, Ckd, hypopituitism, many more can all be connected.. kidneys are not able to fight off infections? Or my immune system. So this last year I started sweating exclusively, espiceally my face, head, embarrassing so…dehydrated urgent care again .
Another bladder possible, kidney infection. I drink close to a 2 liter bottle of water a day because of thirst, but don’t urinate much? Constantly choke when swallowing fluid and food too at times.. Urgent care also, said ‘Anemic low iron, ferritin, very low transferritin?
I’ve seen over 15 Dr’s since this started after car accident 2005, they gave up after Lyme was neg and called it fibromyalgia and fatigue, reiters disease, myalgia, myotis, migraines with aura, but with the other issues I dont think so.
In 2007 tested postive for latent lyme, but turns out it was pneumonia, also had both feet operated on in 2007 cavus deformed foot structure ,and deformed upside down wine bottle look calves, surgeon said CMT inhertied, I told my dr and he said whats that?
Now I’m looking for a new provider, n RI whose educated in the latest diseases, I’d like to go to Boston for free genetic testing and other tests but don’t drive, and no support system. I’m just curious, be honest…should I be right to keep searching as to whats happening in my body? Any resources if you agree?
How does CMV virus compare to Ebv? Could they be mistaken? Also I had shingles, HPV virus, what’s the best way to go about testing for all these issues, my mris ,show pineal cyst ,5.5mmx6.5mmx7.5mm,
1-along with felt to be in normal limits-signal in mass cell, mild right side mastoiditis, , yet..2 yrs later MRI has expanded compared to original mri-maistoidtis right side,
2- prominence in surrounding area soft tissue nasopharyngitis, and mild prominence of cystic adrenoid of lymphoid tissue? I know these aren’t Lyme, but with constant sinus issues, and trouble swallowing without choking often lately, I wonder if you think it warrants following up?
It is common to find evidence of a range of virus on testing. It can be difficult to sort out ENT issues. Don’t forget to look a second time at the bacteria and Babesia that are in a tick.
My 2 yr granddaughter had an engorged tick removed ,followed by rash near bite, high fever ,vomiting diarrhea and swollen lymph nodes in her neck. Started amoxicillin ,4 days after removal of tick and then amox-clav a few days after finishing the amoxicillin.high fever stopped but started complaining of sore hands knees elbows neck and back also complained of tummy pain would wake up in the middle of the night crying due to the neck /back pain and her hands and fingers were hurting.wrnt back to Dr. Asked to be tested for Lyme disease and any other illness that could be causing this. Out now anit 5 weeks at this point Lyme test came back negative ,but positive Rocky Mountain spotted fever numbers very low. Sent to our infectious disease who said the test was iffy reordered a better test at a better Laboratory and said it could also be tularemia. tularemia came back negative Rocky Mountain Spotted Fever positive once again
One week doxycycline. She is better than she was but symptoms are slowly starting to reoccur went to another specialist who said there’s no way she had Rocky Mountain Spotted Fever do to the timeline she would have died did blood test for what all I’m not sure but now is saying she is positive for mono and still waiting on the rest of the test results to come back. My question is could this be Lyme disease instead of rmsf or mono? No one has actually told us what the numbers were for any of the test so far but I’m just worried with her only being too that we’re not going to get the right course of treatment and what the long lasting effects could be… please any advice on what to do next would be greatly. appreciated
Your granddaughter’s illness reflects the difficulties knowing what the cause or causes are when a tick borne illness is part of the concern. The CDC includes up to a 2 week of doxycycline in young children for RMSF without dental problems. RMSF is a serious illness that can be deadly. The fact that your daughter is alive does not rule out RMSF. It is always good to look at other illnesses including Epstein Barr and Cytomegalovirus illness (causes of Mono). Our practice does not work with children your grandaughter’s age. Keep working on it.
I got a bullseye rash 3 times in 2005. Same spot. Drs. Said noone can get a bugbite on the bra line. 13 years later I FINALLY may get treatment for Lyme. Lots of positive tests. Not ALL . Was told about EBV. Recently. Lyme ruined my life. Destroyed my body and spirit..wonder if 4 weeks of doxycycline will work. So many years later.
A single antibiotic course of 4 weeks does not always work even when treated earlier. You should include a doctor experienced in treating Lyme disease along with your other doctors.
I was bitten by a tick in April 2018 and developed fatigue, night sweats and joint pain in knees, hands and feet 3 weeks later. I was prescribed 3 weeks of Doxycycline. The night sweats stopped but the fatigue and joint pain have remained. I had bloodwork 2 weeks ago and was told I have acute active EBV. My IgM for 39 and 23 were positive for Lyme, Lyme IgG/IgM is .94 ISR, quant IgM is 2.01 index. I was told I don’t have Lyme, just EBV. Is it possible I have Lyme, could the Epstein-Barr cause the joint pain or is something else going on?
Lyme and EBV are common Acute active EBV is defined differently by differing doctors. Sometimes the EBV is old. You should included a doctor with experience working with Lyme disease.
Years ago I was diagnosed with Mono, severe case. Was hospitalized for three days, getting well? 18-20 Years later was diagnosed with MS, Which I still have. was tested for Lyme disease, not found. Through out this process I kept telling doctors I thought it was something else. No it’s MS, MRI’s shows it? Still having my doubts, what was I to do. Except keep taking that non working MS Medication.
Until much later, Now. I have been doing some personnel research, coming to the conclusion it is Lyme Disease. ?
It can be so difficult to make a diagnosis. In some cases, my patients have more than one condition. It would be reasonable to include a doctor familiar with tick borne illnesses in your evaluation.
I had a tick bite then 10 days later developed very swollen glands. Two weeks later, still swollen glands, IGG and IGM neg for Lyme, but began 100 mg doxy. Two weeks later, no change in swollen glands. Mono test positive. Doctor says no Lyme, stop doxy, mono only. I am concerned that I have both, and that the mono is caused by Lyme reactivating or allowing its development. Is this a likely scenario?
Both conditions are common. I would have thought it reasonable to treat for both conditions with followup.
Hello Dr. My daughter is pos for cronic bartonella. She is currently in Denver for school and is very sick. swollen glands, face, super cogested, major leg pain, eyes are crusty and goopy. She went to the ER and they said it was either Mono ( which there is no test for) or its viral. My kiddo can eat nor has the energy to do anything. we have tested her for Mono before she was diagnosed with Bart and she was pos for being esposed to it but not currently having it. She never had any signs of mono before till now. I have no idea if she really has mono or a virus. She has been exposed to a close friend at school who just went home with mono. Can the mono test showing she was exposed be wrong? or her bart coudl have casued it to be pos for exposure? and now she currently has it? what test do you suggest we do to figure out if its mono? Are you available to see her? Thanks for this article. Anne
It is important to look at more than one factor. My latest Lyme disease Science Blog reviews to cases where the child had both conditions. It is not always clear that a positive test e.g. Bartonella is a factor. There are IgG and IgM tests for Epstein Barr and for Cytomegalovirus hat may offer insight into the viral question. I am available. Call my office at 914 666 4665 in New York if you need a tick borne evaluation.
My husband (52) came down with a fever of 38 AND 39. I took him to emergency and they supposed it was the flu. Told him to take Tylenol for the fever. The high fever went away but returned a week later. We went back to emerg. same diagnosis and this time Tylenol and Advil again. The fever was less for 3 days ant then back to 39, nite sweats and chills..We went to a different hospital and they took many tests. I noticed a red blotch on his back and then a few more but not the bulls eye and they seem to come and go. His tests showed a swollen spleen, a bit of a fatty liver and very low white platelets- down to 60. They took tests for Lyme and other diseases and we had to wait 5 days for the results. They sent him home with Doxicycline and the next day his fever was down to normal and stayed there during the 2 week course. The tests came back and showed Lyme. WE saw him today re the results and positive for Lyme but also for mono. He said not to take more Doxi and requested lab tests in 2 weeks. He did not have swollen glands or soreness in joints. I think he should take two more weeks of the Doxi as it worked the very next day to take away his fever. The doctor thinks the Doxi has already done its job. Would 2 more weeks hurt along with boosting his immune system with vitamin C in case it is EBV ? How can we cover both bases ? I do not want him to go through what he initially did again. What is the likelihood EPV or LYME or both ? Thank you in advance. I am totally confused on this issue. His platelets are back up to almost normal now after the 2 weeks on Doxi
I have patients where more than mono and a tick borne illness are both possible. Rocky Mountain Spotted Fever, Ehrlichia and Anaplasmosis should be considered. Both are common conditions. I would have your doctor followed for both conditions. I do not like to cut off treatment for a tick borne illness too early in my patients.
This site was an amazing find. Starting October 19th, I ran a fever of 103F (39.5C) for 5 days straight with severe chills, constipation and tiredness. On the 2nd day, I went to the ER and was told by the doctor it was the flu and to treat the fever with acetaminophen and ibuprofen, and also that my platelets were slightly low (140). After the fever broke I started feeling better but was still tired, which I assumed was normal after what I went through. On November 3rd, the fever came back at the same temps as did other symptoms. Again I went to the ER on the 2nd day and again was told it was the flu. But on the 4th day, I went to the ER of a different hospital and that doctor decided since it was my 2nd presentation of the same thing to run a battery of tests from everything from Hepatitis A, B and C to West Nile to Lyme to bacterial infections etc. My platelet count was only 60 then. She asked me to come back the next day to get an ultrasound of my organs (liver, kidney, spleen etc) and then to return again in a few hours when an internist was available. The ultrasound showed an enlarged spleen and fatty liver. On that next ER visit, my platelet count was 49 and my wife noticed a rash that seemed to disappear and reappear elsewhere (not a bulls-eye rash). The ER doctor and the internist discussed my case and decided to start me on a 2 week course of doxycycline 100mg. Amazingly, my fever finally broke the next day (6 days into this 2nd stretch), which was now 2 weeks ago, and has not returned. However, I still get tired in the afternoon and sometimes nap (which is not normal).
About 5 days later, I was called by the ER doctor who told me I tested positive for Lyme.
Today I just had a follow up with my regular doctor who reviewed ALL the tests, and he told me that though I tested positive for Lyme, I also tested positive for EBV, and that my symptoms were more accurately descriptive of Mono than of Lyme. I had hoped to extend my course of doxycycline but he believes 2 weeks was sufficient and that now my immune system is working on putting the EBV in check. After reading this, I am worried that 2 weeks was not sufficient and that I still need to focus on battling Lyme. Perhaps it is true that my symptoms were from EBV/Mono but after reading all this, this only happened because Lyme compromised my immunity which allowed existing EBV I contracted free reign.
In your opinion, is 2 weeks of doxycycline 100mg sufficient in my case?
I will be tested again after Dec 3rd, and I am hoping for a negative result of both Lyme and EBV as well as normal levels for liver function, platelets, etc. In the meantime, I will focus on boosting my immunity with high doses of Vitamin C and other natural methods and hope that can fight off both.
I cannot offer an opinion with an direct evaluation. Mono and tick borne infections are common. Both can occur at the same time. See my Lyme disease science blog at https://danielcameronmd.com/dont-be-mislead-patients-can-have-both-mono-and-lyme-disease/ I am not convinced that a single 2 week course of antibiotics is adequate for my patients.
Dr Cameron
Thank you ever so much for the work you are doing online. You are a Godsend. Your replies to us re Lyme and mono made perfect sense. We continued with Doxi even though the Dr said 2 weeks was enough. It made no sense to us at first but since we live in an area that is rampant with ticks, have 4 shelties that have all been treated for Lyme I am surprised my doctor would not see the possibility of that being the main cause. I also put my husband on a regime that I have had great results with many cancer patients. High Vitamin C the most important ingredient in the drink. His white platelets went from 40 to 221 in less than 2 weeks at next testing. His spleen went back to normal. He says he feels better than he has in months. I am not sure how to approach
this with our Dr as he is a first year practicing Dr. and we continued the Doxi when he said it was enough at 2 weeks. It was given to my husband at emerg not by him. We have both learned so much from your posts.
Thank you again for putting this issue out there . We so appreciate it.
I got sick in the beginning of December and went to the doctor. She did flu and strep tests as i had muscle pain headache and sore throat. They were both negative and she order more tests. A week later test results came back with positive mono and elevated CRP. My doctor said you don’t look like you have mono and we should check Lyme. A week later i was diagnose with Lyme. IGG all negative and 39 and 23 bands on igm were positive. Could this be false positive? I suspect that i have undiagnosed arthritis since i have been having joint pain since February. I found a Lyme specialist who ordered some more advanced tests but i wont be getting the results for another 2 Weeks. I would l like to hear your opinion. Thanks
I also look for more than one cause of any illness. It is difficult to base the diagnosis solely on a test. I often have to use clinical judgement if the tests are mixed.
Tick bite (thought spider bite) back in 1992. Weeks later slurred speech, intense head vise like pressure, weakness in limbs, thinking off dizzy(sea sickness feeling)These symptoms plus a drofoot lasted on and off for over 20 years with no explanation. In and out of emergency rooms and over 6 months at Mayo, UCSF, Stanford, Cedars still with no diagnosis. 50+ docs mostly neurologists, Multiple abnormal EMG’s, Abnormal Spect showing brain vasculitis but normal brain MRI. I was NEVER tested for infectious causes (viral or bacterial) during this time only MS which was ruled out. Finally IGENEX IGM pos. I8,31,34,41,45 and IGG 31,34,39,41,58. Pos. Babesia D. On Fish test and andAdvanced lab. Pos. Treated on IV antibiotics. Much better but now pos thru Quest western blot IGG 18,93and DNA pos. FOR CMV IGG >10.00 AND IGM 102> and EBV POS> dna 26,000 copies and EBV VCA IGG >750.00 IGM >160.00and EBNA IGG405.00. I’v now been diagnosed with having both CMV and EBV disease. Is band 31 on Igenex test the only band that can be altered by active EBV infection or can the other bands be altered as well? If so, could I never have had Lyme and alway EBV instead? PCR DNA pos. doesn’t lie.The doctors want to do aggressive treatment with Valcyte and Ganciclovir but I feel that these are bandaids to primary problem which is still Lyme . When I am on AZith my symptoms decline radically. My symptoms come in flares lasting days and months. I go from feeling great to within an hour having Head pressure, behind eyes (vise like) sweating, dropfoot worse, lower back pain, dizzy, vision blurred, burning skin, fluish , exhausted and arthritic like joint and tendon pain throughout my body. Right knee numb .
It can be difficult to find a path to wellness. You should include a second look at a tick borne illness including Babesia.
Mono is a contagious illness that’s caused primarily by the Epstein-Barr virus (EBV). Most of the time, medications will not help speed recovery (though some painkillers may ease symptoms). But knowing what precautions to take during the healing process can go a long way in helping you feel better sooner and avoid complications. It’s not known exactly how long someone can be contagious after they get the virus. People can shed the virus in their oral secretions for several years, and the shedding is intermittent. You can also refer to this article which states all the necessary details about mononucleosis https://www.everydayhealth.com/mononucleosis/
I have been diagnosed with ebv
Huge allergies that set it off. That being said i have had what i believe to be lyme 2 or 3 times now and had west nile in 07. First lyme in 03. Every symptom was text book. No doctor where i live knew about it at the time so i found one that would give me doxy. 28 days. Got rid of all symptoms. Twice more every 5 to 7 years i jave had this. Last in sept. 18. Doxy again. Had blood teat in jan 19 for the first time for Any of this as it is now becoming debilitating
No tidors for lyme. Ebv present. I still say lyme. Why would symptoms disappear with doxy if it has been ebv. Ebv is a virus. I say its lyme. I want help.
I have seen the same situation in my practice. You should include a doctor with experience treating Lyme disease with other approaches.
Dr. Cameron,
I need help understanding the following:
Sept. 2017 I was very fatigued for a couple of weeks, went to ENT who ordred EBV:
Result IGM 46.50, IGG 74.10
Both positive.
Eventually I got much better within a couple of weeks with proper care.
A couple of months later, I had a couple of odd symptoms, a finger twitching every once in a while and another a finger feeling “heat”. I thought I had a pinched nerve in the elbow or perhaps carpal tunnel.
Went to see neurologist, he ordered Lyme test:
Lyme WB Blot, Serum:
Lyme AB IgG
everything negative BUT IgG41 Present Abnormal
Lyme Ab IgM
IgM p41 Absent
IgM p39 Present Abnormal
IgM p23 Present Abnormal
The doctor not being convinced ordered another test a month later:
However a month later I did a Lyme Total Ab Test/reflex:
Lyme IgG/IgM Ab Result <0.91 Negative
I dont have any pain or other symptoms except anxiety that has been present since late 2016.
What do you make of these results that are conflicting? Moreover, EBV can falsify Lyme test from what I have read.
thank you kindly.
There are so many causes of anxiety in addition to Lyme disease. Your doctor will have to use clinical judgment.
thank you for your reply.
What do you make of the WB results that seem to be positive (or cross reactive with previous positive EBV??) which was then followed by a negative Lyme IgG/IgM ab Result <0.91?
You could have a positive band (s) for many reasons. Your doctor would have to use clinical judgment.
Please read LAB 257. This was an eye opener for myself and my wife who has late stage Chronic Lymes disease and has suffered terribly. It is very sad to read but will provide the truth behind Lymes, West Nile Virus etc… Keep in mind that Lymes mimics hundreds of other diseases.
I went from Doctor to Doctor for a year and half trying to find out what was wrong. I had dizzy spells, headaches, Memory loss, Stinging in the head, burning skin, fever occasionally, Joint pain, feeling like something is crawling on me, feeling like something is stinging me. Stinging in both my eyes and tongue. Sometimes stinging on my nose and lips, burning up at night, feeling tired all time and hurts to walk. I was diagnosed with Chronic Lyme disease with Neuropahty. I had 21 day oral antibodies and then two months later had 4 weeks Picc line of Doxy. I felt better while I was on doxy but a few days coming off I am back to were I was at before. The pain is horrible and some days I just want to die. They did a blood test last week and Epstein Barr came back high.
Did you wife get any better? What helped?
I find other antibiotics helpful for patient in my practice.
I had Lyme disease in 2010 but we caught it on time, I was treated and felt normal again for 5 years, in 2015 I got tired and anxiety attacks went to ER and they found Mono, its been 4 years and still not recovered I have seen so many doctors and I haven’t found any answer or diagnosis for my symptoms, feeling exauhusted all the time and big pressure in my head, that makes it vibrate when I seat, I have to rest all the time if I stand for long, I keep active but I get so exhausted.
I also got menopause at the same time of Mono which was considered early I was only 45 so everything is so confusing for drs to determine what’s going on.
What should I do, they have done all kinds of tests and they found that most of my hormones are not normal, and they just prescribed supplements.
What should I do, I feel like this has to be with Lyme.
Even doctors experienced treating Lyme disease differ in their approach. Babesia is a commonly overlooked tick bore infections associated with sweats. You might also benefit from a second look to make sure another illness is not the cause.
In 2017 after hiking i noticed a tick on the back of my leg . I pulled on it thinking i got it off . 2 days later my leg still hurt and went to my family doctor. Seeing it was on the back of my leg i never noticed the bullseye rash . The doctor lanced it and removed the head …horribly painful for such a little pin dot . Immediately I was put on doxycycline for 30 days twice a day . It was like i had the flu and very sick to my stomach. The doctor took me off of the med just 2 weeks after starting . The bloodwork he did the first day i went in tested negative .The Symptoms still plague me on and off . He’s been blaming it on the fibromyalgia i have had for 16 years . But this is much different. I went to a walk in clinic about 3 months ago with a swollen gland the size of a golf ball on the back of my head with all the same symptoms except very very exhausted and headache . They tested for Epstein barr and it tested positive . I had mono as a teen so they said it could test false positive . Still feeling sick and was told by my family doctor it could take 6 months to get better . Now my hands hurt alot and my joints and muscles . Almost like it’s my bones . Can’t grasp things as well or open simple things like a bottle . My finger joints are developing bumps and the bottom of one of my feet . All of this on my left side . I don’t know if this could all be connected . Even my left breast became infected since the positive test for Epstein barr . Could it be lyme? Epstein barr? Kinda scared
I am reluctant to blame the problem on a old Epstein Barr titer in my practice. The blood test for Lyme disease can be negative when doxycycline is given. I typically look a second time for Lyme disease.
My daughter has lyme and coinfections, came off all meds for lyme in april. Few weeks later had a sinus infection and was treated. About 3 weeks later wound up in hospital running a 104 fever. After almost 2 weeks in one hospital was transferred to another hospital. Was given an Ivig treatment and fever finally was gone. Long story short, she had a very severe case of ebv and mono. She also had many other issues happen caused from the ebv. Is PCR testing better than testing for the antibodies of ebv? Having a conflict between our llmd and hematologist/oncologist who treated my daughter in hospital. Llmd wants her to take 1gram of valtrex a day where as hematologist doesnt want her too.
I am not familiar with the reliability of the PCR test for EBV. I cannot tell from the request whether antibiotics were prescribed.
Hi Bobbie – My story is very similar to your daughters. Although, not nearly as severe! I am so sorry you had to go through that. However, I was diagnosed with lymes 5 months ago and went through treatment. A few weeks later I developed a sinus infection, which was my first one ever. Then two weeks after that I was diagnosed with mono. I am still experiencing horrible fatigue and nausea even 5 weeks after the diagnosis. I know something is still not right and I continue to feel pressure and pain on the left side of my chest and arm. Did you happen to find something that worked for your daughter? Is she better? I really would appreciate any update or insight you could give me as I try to navigate my way through this!
I find it difficult to determine when Lyme disease has resolved in my patients. Lyme disease can lead to head pressure that mimics head pressure. Lyme disease and “mono” can look alike.
I believe my husband has Lyme and possibly anaplasmosis, we are still waiting for bloodwork results. He has a positive monospot for sure. If his mono is a result of Lyme how contagious is it, if at all?
I have not heard that Lyme disease makes Mono more contagious.
Hello,
Can I please get some advise? Would deeply appreciate.
I’m a man who was diagnosed with mono at age 21. I was really sick but recovered from the initial symptoms in a month or two.
However, severe neurological symptoms remained till this day 5 years later.
My skin on my legs and arms are constantly burning and I have severe head pressure. Can’t stand up for long.
I have been tested for many things and they always come back negative/normal. In my country, chronic lime does not exist. Patients with those symptoms arr classified as “mentally ill”. So no lime doctor around.
Would it still be an idea for me to try some weeks of doxycycline? Reading about this gave me some hope.
I advise individuals with similar symptoms to consider treatment starting with doxycycline if I cannot find another cause. It will depend on the clinical judgement of your doctor.
Thank you very much dr.
I have now been prescribed doxycycline. My doctor is not sure about doses and duration though as he is not knowledgable about Lyme or EBV.
Could you please tell me what you advise your patients regarding dose and how and when to take doxycycline?
Deeply appreciate it.
Matt
Doctors are divided. Some prescribe 10 to 14 days for their patients. I typically prescribe 4 weeks and have them return for evaluation.
Doc, I have had multiple ebv tests over the years.
Always the same..
igm neg
vca IGG pos- 600>
ea IGG neg
ebna IGG neg
probably close to 20 years it’s been like this. My 18 yr old is testing the same. I have always had muscle problems and fatigue since I was 18. Now I’m 43. My GP does not know what to make of it. Similar reactions by other GPs over the years. Had two diagnose me for CFS saying that eating right and exercise is the best thing. I work for UPS as a driver… lots of exercise. lol. I always feel tired and wiped out. Everyday every joint hurts and aches. Pain goes away if I drink lots of coffee… lol.
EBV can stay positive even in healthy patients in my practice. I find that looking again for another illness including a tick borne illness might be helpful.
Hi, I hope you still check comments here, doctor. I have had chronic EBV for a while on tests not many symptoms of it. I did have other symptoms that mimicked MS. I had a full workup done and did not have MS. I had been fine for the last three years, and then in March, I got my covid-19 vaccine. All the symptoms I had four years ago have come back and strong. I went to the doctor again. I made my way to a hematologist who took 21 vials of blood. My liver enzymes are always elevated, my sed rate is always higher than normal, and I have high immunoglobulin IG. I tested for Lyme, but only bands 41 and 39 iGG came back positive. My doctor still said, since I have no answers and some positive, let’s treat you for Lyme. I’ve been on doxycycline for two weeks. I’m Bout to do two more weeks. When I take the antibiotics, I feel better. My symptoms are well when not in antibiotics, numb patches on my head, wrist, and back of the leg. Tingling in my face scalp and lip. Constantly. Hair loss always liver enzyme issues etc. Just looking for some answers, do you think I’m doing the right course of treatment? Also, can EBV and Lyme be working together?
Thanks.
Thanks for sharing your story including a flare-up. I have Lyme disease patients who have done well with the vaccine and some had had a flare-up.
It sounds as if doxycycline is helping. It is still unclear as to how much EBV plays a role. I advise my patients to a second time at a infection.
Same exact experience.
Some IgM lyme tests came positive in Feb 2021.
Symptoms of Fatigue and brain Fog became severe after Covid vaccination during March 2021.
Doctor prescribed doxycycline in May 2021 as trial therapy for 4 weeks. Felt much better during the antibiotics therapy. Symptoms returned after antibiotics stopped. I have history of Mono 20 years.
I suspect that Mono has been reactivated by undiagnosed Covid.
Maybe.
And maybe the tick borne illness has not resolved.
It’s great to find this site I’m happy to be able to leave a comment and hopefully get some answers.
10-10-2001 I was bit by a deer tick. At the time I lived in the middle of the woods in Connecticut about 10 miles away from Lyme Connecticut so the area was ground zero for Lyme disease.
within three days I couldn’t move my joints my whole body hurt I had nodules growing on the hands of my fingers. The sunlight bothers my eyes. I was in so much pain. It would literally take me 10 minutes just to get out of bed in the morning because my body felt like it had rigor mortis. I kept going to my general practitioner literally crying every time I went and I was told I did not have Lyme disease. A dog that lived in our home died of Lyme disease. A woman that lived in our home at the time got Alzheimer’s disease and her early 40s. The person that I was living with at the time got lLyme disease. I finally found an infectious disease Doctor Who was willing to treat me without a positive Lyme disease test. I was on doxycycline for almost a year I swear that is what saved my life. For a few years afterwards I would get a refill of doxycycline when my symptoms would start to appear that took care of it.
Recently my doctor my current doctor tested me for Epstein-Barr virus positive. All of the tests were positive. I do not have Epstein-Barr. I have Lyme disease. When I first got Lyme disease I never had a positive test result ever not one of them were positive but I know it’s what I have because I remember the day I was bit by the tick because it was my birthday. So I guess my question is now what do I do about this. Can I get some doxycycline from someone as I feel that this Lyme disease has completely ravaged my body. My Epstein-Barr virus levels were through the roof on my test.
I live in florida now- any recommendations?
I am glad you improved for a while. You will need to be evaluated again by a doctor who is experienced in treating Lyme disease to see if there are any treatment options. There are other treatments than doxycycline. You should also rule out other illnesses. You should check out lists to include The Global Lyme Alliance, ILADS and the Lyme disease association.
Very informative blog. I was diagnosed with Lyme’s years ago, recently had dibilitating tiredness, no appetite, joint and muscle pain. Testing determined I have Epstein Barr Syndrome, EBV VIRAL CAPSID AG (VCA) AB (IGG) – >750.00 *High*. I would like to know if Tinnitus and/or hearing loss can result from Lyme’s or EBS. My hearing specialist said highly unlikely, but if Lyme’s can cause nerve damage, why not your auditory nerve. This Tinnitus is driving me insane at times.
I have patients with Lyme disease with tinnitus and hearing loss. Others have too. Here are two blogs I authored that addressed that issue. https://danielcameronmd.com/lyme-disease-tinnitus-hearing-loss/ and https://danielcameronmd.com/lyme-disease-vertigo-hearing-loss/
I have seen patients with both Lyme disease and an unexplained tinnitus and hearing loss. I have my patients work with their hearing specialist as you have at the same time.
I was diagnosed with Lyme in 2006 and was on doxycycline for two weeks and ended up with ulcers in my esophagus. I ended up using a holistic approach named Cowden protocol. It was a series of tinctures that I took for 2 months. I felt much better and only have had a few flare ups over the years. Now here I am at age 60 and was just diagnosed with Epstein Barr. They put me on amoxicillin for 10 days. I felt a little better but now a month later, all my joints hurt and I am exhausted. It feels like Lyme all over again. I live in Florida and the doctors here are awful. They just ignore everything you say and I can’t get them to give me any treatment because the Lyme test is negative. Is there a way to get anti-biotics through another source? Completely frustrated with the medical community here.
Doctors are divided. I have advised my patient with similar situations to consult a doctor with experience treating chronic manifestations of Lyme disease even if the test are negative in addition to their standard workup.
I’m at a loss. 50 years old, menopausal and just diagnosed positive for Mono. I however have felt terrible for over a year, and they keep saying “oh it’s menopause”.
I literally have the symptoms of Lyme Disease. I saw the doc last June for a rash that was diagnosed as viral. I was given a topical cream and sent on my way.
The one symptom that can’t be explained away is muscle twitches, and feeling of constant flu. I keep being told it’s anxiety and possible allergies.
What kind of doc do I see that will do a Lyme test? Or take me seriously? My mental health is being affected and the aggrevation of no one listening is so tiring.
I often see patients in my practice in New York who are diagnosed with multiple conditions before Lyme disease is considered. You may have to reach out to Global Lyme Alliance, LymeDisease.org or ILADS for doctor with experience treating chronic manifestations of Lyme disease if you remain ill.
Hello, this was an interesting article to read, because although I do not have EBV, every time blood tests are done, there are more positive lyme disease bands. The doctor also took a HHV6 blood test, which came back borderline positive for HHV6-A.
I have been getting treated for lyme with alternating 2 antibiotics…3 weeks on doxycycline, then 3 weeks on clarithromycin…then repeat. The doc has also been using hydroxychloroquine, which I take everyday regardless of the antibiotic I happen to be on at the time. It has been 3 months and overall I feel as if I am improving, however I continue to experience “herxing” symptoms for about a week every time I alternate between the Doxy and Clarithromycin. It is frustrating, and I was curious about how HH6 can play into this? That is actually how I somehow found this article…when I did a google search for “HH6 ans Lyme Disease.” Now that it has been 3 months, the doctor thinks we should stop the ABX…however, because I still have symptoms (milder with every “herx”) I feel that I need to stay on them for now…but obviously do not want to continue doing so without medical supervision. I would be interested in your feedback. Thank you.
I am not a fan of pulse therapy. Some of my colleagues are. I treat based on response to treatment. BTW, I have patients who benefit from other antibiotics.
I had this happen to me. I am a 40 y/o woman and went to the doctor and subsequently ERs with flu like symptoms (high fever, headache, body pain). I was tested twice using the mono spot test and tested positive for mono at both ERs. I had mono as a teenager but I was told even though it is rare to get a second time, but it can happen. My condition worsened and finally after erythemas all over my body that were very clearly associated with Lyme, my doctor tested me for Lyme nearly 4 weeks into my symptoms and I was positive for Lyme.
I have had patients with the same experience.