When a Lyme disease flare occurs, patients will notice a return of the symptoms they have experienced before or a worsening of existing symptoms. Some patients may also develop new symptoms. A flare-up can come and go and vary in intensity. What does a Lyme flare-up feel like? The symptoms of a flare-up can include:
- an increase in fatigue
- problems with memory and concentration, sometimes referred to as ‘brain fog’
- extreme sensitivity to bright lights, heat, cold, and noise
- muscle stiffness
- mood changes (including irritability)
- poor quality sleep
- dizziness
- numbness or tingling in hands and feet
- widespread muscle pain
- blurred vision
- general body pain
What triggers a flare-up?
One of the best ways to prevent a flare is to determine what might be causing it in the first place. These causes are called triggers. Triggers for Lyme disease vary by person, but they can include:
- emotional stress (such as a divorce, death in the family, or accidents)
- physical stress to the body (i.e., surgery, physical harm, concussion)
- life stress or stressful events
- infections, colds or viral illnesses
- exhaustion
- diets including processed sugars and alcohol
- menstrual period
- lack of sleep
- traveling and/or changes in schedule
- changes in treatment
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How do you prevent a flare-up?>
There are ways to help prevent a flare-up but most importantly, patients need to listen to their bodies and identify triggers that set off a flare in symptoms. Following are several ways to prevent a flare-up:
- Treat your Lyme disease
- Reduce your stress
- Get enough rest and sleep
- Stay away from foods that make you feel worse, including alcohol and processed sugars
- Learn to pace yourself to avoid doing too much when you are feeling well
- Keep up your health
- Stay hydrated
- Work with your doctor to get your symptoms under control
- Some people find ‘positive thinking’ helpful
- Try focusing on the things you can do, rather than those you can’t
- You might find a mental health provider helpful
Editor’s note. What does a Lyme flare-up feel like? Ask the Lyme doc sponsored by Dr. Cameron
I had knee replacement 28 months ago. My knee swelled and was drained 6 times. A blood test revealed Lyme and I took antibiotics for 8 weeks. The knee continues to swell. Blood tests and fluid analysis show no infection. A bone scan was hot in 3 areas. Any suggestions? Thank you.
I don’t think there is any single item to describe a Lyme flare up…no matter what I feel it’s due to Lyme and in my opinion Morgellons. Ie never seen so many things come out of my skin. It’s like I’ve become a three D printer of unusual and horrible things. Anyone with Lyme knows there is no ONE single flare up, it’s an explosion of every possible pain can imagine. Im having a Lyme flare up now, but this is some sort of parasite that has caused my stomach to expand and I’m in pain beyond belief, I feel these things jumping on my face, I caught of what looks like egg sacs of parasites. My skin is crawling with larvae and eggs. Not one Dr or hospital has looked to see what is really there. I can see it, describe it, my liver and stomach are being attacked but no one cares. Im at the lowest point of my entire life and can get no help, nothing…I simply cry all the time. I know that an antiparasitic can help me feel a little better, but ivermectin is impossible to get. It’s being listed as a Covid cure, henceforth it’s gone, disappeared.
I’m starting to see that many drs know what I have but not one will step up and say so. When you see them ignore huge sores, weird looking things coming from my body, yet not look, something is not right. As a result I lay suffering with no pain meds, no antianxiety meds and nothing to keep me from jumping out of my skin. Im going to die this way, I can feel it.
Funny, I am having the same issues of feeling like bugs are crawling all in my head. My stomach looks
like a watermelon. I’m 70. I am having a terrible flare-up as well. Had Omicron and was on steroids. Another thing that I have I call seizures but I am fully conscious although sometimes I can respond and sometimes I can’t. While having a seizure, I can do things although I am shaking or hollering( and yes I mean hollering), sometimes my face looks like I am stroking. . Other times my upper body shakes violently and my arms flail and my head shakes violently. This started in 2014 and it was 2 years before I was diagnosed with Lyme’s thanks to a wonderful PA. I have had 3 MRIS and 72 hour eeg with video. Nothing they can find wrong with me. Glad I found this page.
Wow you totally just broke my heart!!! I’m a constant flare up and also have had 2 brain surgeries since being DX’d and also have cysts in the center of my spinal canal! My entire left side (arm up to the left half of my scalp) is constantly like I’m being shocked, I have to be very careful if I cough because it feels like I’m going to die! But wow…I still couldn’t imagine what you are dealing with,
I’m soooo soooo sorry! I’m curious beyond belief what is causing you to deal with this and why not a single doctor will help you!! Do NOT give up, you are the only one that can truly advocate for your health and treatment!!! Please demand help and answers!!
Email me lauriehilton@att.net. I can help you as I just recovered from lyme and co-infections with no help from the doctors. Your post made me so sad and I would really like to help.
what did u do as i have a bad flare up now and my upper body is killing me and my shoulders are on fire ugh please help having this flare up for 4 months now since my mom got so sick and now she pass away so sad
So sorry for you.
My mom suffered with unknown organisms. 15 years and ate away her ear, multiple skin grafts. Things came out of her head, her skin and “they”couldn’t figure out what bug. Thru faith in God and her LLMD, they stopped with the drug Disulfrum.
It’s the drug for alcoholics (she’s not)
But it’s worth a try because there is new research on the benefits.
I myself have went years undiagnosed and then at 30 was lyme and 3 coinfections and one new coinfection 8 years after first time tested.
Just wanted to respond incase u see this and that drug might help
Hi melony. I have been trying to figure out what has been going on with me for well over a year now, what you described is exactly what I am going through, no doctor will even acknowledge any proof I can possibly gather to give to them. I am losing hope and I don’t want that…my daughter needs me. I am only 25 years old and I have been feeling like this is how I am going to die but no one will listen to me. I had to beg for an MRI after being told I just had migraines only for them to actually find something they called (likely a chronic micro hemorrhage) but that is all they told me and don’t seem to have any intentions on trying to figure out what may be causing that (if that even is what they found on my MRI)and I am scared, mainly for my daughters sake, I am all that she has. I was wondering if you ever got any answers and if you could please point me in the right direction I am so desperate at this point and I don’t even know what to do.
A brain MRI can often show areas of demyelination in many conditions and in healthy people. I have to look at the whole history rather than the lesions in my patients.
With a Lyme flare-up, I usually experience intense headaches during the night and when I awake in the morning; these often last for days. Muscle soreness is so intense that I feel that I’ve been hit by a truck. Also, the brain fog I experience is so strong that my short term memory along with typing /writing is non-existent. I do not trust myself to operate a motor vehicle because all of my senses are heavily muted. I wish someone would tell me where the joy in life is….
I encourage my patients to try any find joy despite the illness.
And Acupuncture!!!! Helps. Have to make sure you have one that understands and is qualified to treat you with Lyme disease
And Acupuncture!!!! Helps. Have to make sure you have one that understands and is qualified to treat you with Lyme disease
The Joy in life… Thru Lyme disease?? Taking time to exercise, walking or rebounding with a Bellicon. Get a good brand! It has changed my energy levels, when done 4-6 days, 10-20 minute workouts. Check out Earth and Owl..she uses a quality rebounder & assists every one, even seniors!! For free on you-tube. When you force your lymph nodes to drain, it helps make the immune system be stronger against Lyme. It eliminates waste within our cells, for optimal health & I find it helps with pain with my joints, from Lyme disease. Also huge for Lyme disease: Invest in a Far-Infared Sauna. It helps joint pain management as well. Take Vitamins every day!! Twice a day. Take each one seperate: Such as D-3(5), B-complex, magnesium, zinc, ester-c, beta-glucans, nascent idodine, garden of life-organic plant calcium too. Get bloodwork done on your minerals and vitamins and you will know if your low. Lyme survivors need extra help! Drink plenty of water 10% of your weight, per day!! . A healthier diet rich in Turkey and fish and chicken. Lots of cruciferous veggies! I take Life extension x-tra strength cruciferous vegetable extract, every night. Most importantly, every morning, take time with Jesus Christ. Read the living word, or listen to a daily app for Holy Bible. Get prayer time, every morning! Just say the Father’s prayer before getting outta bed for a start. After a while He will lead you more and more. I challenge you to just 15-20 minutes a morning, with God Almighty. Before your day starts. Yes, get up 20 minutues earlier, have your tea or coffee with him. (Give up alchohol and caffeine slowly, it lowers the immune system and weakens, me to Lyme flare ups..) Then watch and see the changes. Phil 4:6 says: Be careful for nothing; but in everything by prayer and supplication with Thanksgiving let your requests be made known unto God. So thank Him for being with you and for the health He will restore onto your body. By his stripes and wounds be healed. Thank h
Him for the wisdom He will give you to eating healthy and the will-power to enjoy exercising..and thankful He will provide you with everything you need! Thankful He will lead you. Even if it’s just for today that He provides. And He will too! Wait and see. It’s tough to implement positive thinking while ignoring the symptoms to get thru daily activities of life with pain and Lyme. Everything changes day by day! Anything is possible, if you make Jesus first, every day. Thru the day, over and over and over again, give it to Him. The pain and exhaustion thru the trial. He will bring you to health. Tell that Dragon, the Devil, my Lord and Savior Jesus Christ has given me authority over YOU. Over Lyme disease. Over any and all plans against yourself. I speak it in JESUS name! I am stage 3 Lyme. Diagnosed in 2008. Suffered many years 5! Without finding out. I had (see positive thinking) had… Lyme and auto immunne. I speak all of this to you from personal experience of 14years diagnosed! I suffered many a years more, because of my lack of relationship with our Lord Jesus! I still have my days. But those days, I rest, and praise God laying there. I learn to not feel bad on those days and let the Spirit of Wisdom thru the Holy Ghost, our helper, Jesus sent.. lead me every day, now, forever. I feel unexplainably better then the non believer. Don’t believe me? Try it yourself. Anyone who reads this.. I pray health in Jesus name! Amen
Glad some people find healing thru Jesus. Both my son and I each died from different diseases because of my faith driven optimism. God didn’t protect us from diseases, chronic illnesses and suffering, tick bites, sexual predators, family abusers, friends and strangers alike who stole and scammed us out of everything. My misplaced faith and trust that others would do the right things like we/I would cost us everything. Everything. I appreciate positivity and encouraging everyone to take time each day to connect with their higher power and themselves, but I’d appreciate science and a decent healthcare system more.
Unfortunately my and countless others’ spiritual and financial banks are beyond tapped from this debilitating disease. I’ve been suicidal from Lyme itself, and also from the side effects of treatment. That was back when I temporarily found halfway supportive care providers. Now there are no knowledgeable Lyme Dr options within our means.
Our family has lost everything we had worked and planned for thanks to this and other chronic conditions we did not ask for and cannot get help for. What do those of us who have been financially bled to death and are all prayed out do to be taken seriously? Seriously?
I don’t want to have to do antibiotics again, but I did have a small window after each grueling round where I felt some improvement. We were eating as good as possible within our means, but it’s increasingly difficult with rising food costs, special dietary needs, and negative energy to food prep or exercise.
What do I do to get SOMEONE to listen to me about the importance of testing for specific strains and coinfections? My past care providers and specialists explained to me why this was crucial along with aggressive treatment even if not 5+ strains positive (although in subsequent tests I did have more than 5 and EN on shins). No current ones will do this for me though, & thanks to stress and other conditions I’ve been in horrific symptom flares pre-covid. I can’t live like this. If it wasn’t for my kids I’d have taken my own life by now, & even considered it despite having them before. Especially because my family would be better off and financially ok without me.
Past Infectious Disease specialists told me I had it so bad that I needed iv antibiotics but wasn’t allowed because of past IVDA even though I had over 5yrs clean and active in recovery community helping others at the time and I ended up down that path in the first place because my Lyme had been so bad and misdiagnosed for so many years after trying all of the right things to no avail. There is only so much some people can take. Lesson here: Addicts- there’s literally no point in getting clean because you’ll always be treated like you’re an active dirty addict anyway. This is exactly why people don’t seek help- because of the impossible to shed stigmas and prevention of getting treatment for future or overlooked conditions.
I grew up believing. I tried getting my children to believe. We don’t believe in anything anymore, but maybe your God will listen to your prayers for us because he certainly hasn’t listened to ours.
Thank you for sharing your journey with Jesus to heal from Lyme. True, with God all things are possible. Thank you for your counsel. Maybe a combination of Christ and treatment will help many or all suffering from this dreadful illness. I’ve been bitten so many times but I’ve never gotten a Lyme diagnosis from any doctor. Last week I got bit again. This time by tiniest of ticks and after three days I called my doctor who put me on doxycycline twice a day for two weeks. I was feeling okay but today I made the mistake of having two barbacos tacos and now I’m paying the price. In excrutiating pain for hours. Lyme is the most confusing illness I know. No one can give definitive answers on it. But in Jesus’s name I’m finally starting to feel better since I started writing this. To all who suffer from any autoimmune illness my prayers go out for you. Go to Jesus and lay it all out at his feet. In His name find healing. God bless everyone in Jesus’s name. Amen
That was the BEST response to Lyme disease that I ever heard!!!!!!!
How do you deal with the Muscle Soreness? My arms and legs are killing me. I can hardly walk and I can’t reach for anything because my arms are so sore. Is there anything that can help me that you know of. Thank you Joan
In the Netherlands chronic lymepatients are desperate for help and hope things will change and doctors eyes will be opened someday.
When I experience a flare up I’ ll be on antibiotics & chloroquinine for months until all symtoms are gone. There are only three ilads left here , luckely I can afford treatment by taking meds oraly. Flare ups come with very painfull radiculitis like symtoms, burning feet and limbs, heavy brainfog and fears.
I have chronic pain at times I have been diagnosed with neuropathy and they don’t know why. No back or not a diabetic. I now have upper shoulder pain and no reason I was diagnosed with Lyme 15+ years ago Family doctor and a Lyme doctor said yes even though it didn’t show in the blood work. Local hospital said no I had all systems breathing chest pain achy joints etc etc etc. At times vision breathing and chronic pain
There are so many causes for any neuropathy or shoulder pain. I find Lyme disease has been the cause of these problems in some of my patients some of the time.
Has anyone ever complained of getting migraines? My daughter was 12 when diagnosed with Lyme disease. They gave her 2 weeks of antibiotics. Never had a tx since. She is almost 20 now and yesterday said she lost vision in one eye and a migraine started. She woke up today with one again..could this be the start of a flare up?
There are so many causes of vision loss and a migraine. I start with a neurologist and ophthalmologist. I would also include a visit to an doctor familiar with chronic manifestations of Lyme disease. There are often other findings that help with the diagnosis of Lyme disease.
There are so many causes of vision loss and a migraine. I start with a neurologist and ophthalmologist. I would also include a visit to an doctor familiar with chronic manifestations of Lyme disease. There are often other findings that help with the diagnosis of Lyme disease.
I had positive Lymes 5 years ago and 4 wks antibiotics and seemed all fine then in JulyAug 2021 just after my covid vaccination suddenly I’m ridiculously exhausted to the point of struggling to get up. Struggling to work and get through a day.
I mean I have to – I work full time and am single parent so I am getting on with it but I feel so tired/ neck aches/ can’t motivate exercise (despite being a keen runner) /brain fog/blurred vision and sinus issues. I am miserable. I had blood tests for menopause and they found my Lymes antibodies were elevated but then said there is no treatment …. Surely that’s not true. HELP!!!
My symptoms greatly improved after starting homeopathic treatment with a functional medicine practitioner. I see Dr. Hirani in Culver City, California
Hi Jane! I was forced to get the vax and experienced similar symptoms. I was on a mad witch hunt to discover what was going on w my body and finally saw a functional medicine doc who diagnosed me w Lymes. Turns out, it was dormant but the vax triggered it. I do the herbal treatment which consists of cats claw and a ton of other holistic remedies i purchase from “beyond balance”. I am currently having a flare up and feel so frustrated by the whole thing. It’s a complicated dx and more like a lifetime disease unfortunately. At least in my experience.
Vitamin C Vitamin B complex. Glutathione Everything iv
People with Lyme should NEVER get a vaccine, especially not the covid vaccine!!!! Your doctor should have advised against it. I am so sorry. You need someone who specializes in vaccine detox. Good luck.
The best advise is never to get COVID. Quite a few have taken the COVID-19 successfully in a survey published in the journal Antibiotics (Basel) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10044022/
1000^ true . It’s your body into cytokine storm & inflammation work go into overdrive. Do not listen to media or mainstream. The jab NOT sage, especially for Lyme patients.
I had the same problem! Diagnosed with Lyme disease 20+ years ago. Treated and in remission. Got Moderna covid vaccines in April 2021 and have been suffering terribly since May 2021. Severe muscle and joint pain in back, neck, shoulders, hips, knees snd hands.
I advise any patients with long covid or a flareup after a covid vaccine to rule out Lyme
Well, I’ve not yet been officially diagnosed, but two years ago I started noticing this box like square shaped red blotch on my upper arm. Now I’ve had a few ticks on me in my lifetime. I’m a 48 year old woman. My first ever tick on me was on my neck back in 1979 on a camping trip in the California High Sierras. The year of the bugs I was bitten, stung and hooked by a fishing pole in my finger! Anyhow one night back in our cabin, my Dad noticed something on the back of my neck and he fought and fought to back this big sucker out with a cigarette! More recently, I had to take a hike literally for safety about 6 years ago and had to hoof it through a boggy marsh of the FWY when my car broken down and I had no choice but to abandon a one lane overpass. Otherwise I would get hit. I hit poison oak, chiggers and a tick in my arm. Then a small one cleaning our backyard within the last year. I have diabetes and a lot of other things that were part of a package deal being diagnosed with the disease at 22. I lost my sight in my left eye and hearing in my left ear due to a bacterial infection. Never knew what caused it and sadly forgotten what it was called. My memory is struggling. Fatigued all of the time. Sick with fevers, vomiting etc. I just thought this was my diabetes until now, I have more and more of these red areas showing up! Also a huge UV sensitivity to light and I blister in sun. Don’t know if that’s related. Losing hair as well and irritated, I see a lot of stress and have had covid twice this year and I’m Anti Vax so please refrain from your personal perspectives. I take good care of myself otherwise. I eat healthy and when I feel good I garden. I can’t run and workout like I use. Any advice where I should go to get a diagnosis, I’ve been on a year long waitlist for my physician!!! I need relief I’m in severe pain, with all symptoms. Urgent care or ER since only my doctor can give me a referral to a specialist! What can I do!? Thanks!
Hi Leigh, I am not a pro, but am dealing with Lyme, and many other things that also go hand in hand with Lymes, but many of your symptoms yell Lupus to me. My Mom had Lupus from the age of 14. IMO, I think you should see a Rheumatologist. BEST of luck to you, please update!
Have you been tested for lupus?
I would try to see a doctor that specializes in autoimmune diseases.
I went to the ER and begged the PA to help me so he ordered the tests for me and they came back as Late Stage Lyme Disease. Everyone else I had talked to said no and didn’t believe me. Some people don’t show the pain externally. Good luck to you!
May I ask what tests the ER did to determine Late Stage Lyme Disease?
I had tension headaches and migraine headaches everyday for 10 years. The CFL lights in office buildings make it so much worse and do irritate the nervous system as well.
Yes same about the headaches! I’ve told my care providers I literally cannot remember the last time I haven’t had a headache. This is no way to live. I’ve also tried countless specialists only to be bounced around. I can’t handle the thought of (or afford) any more drs telling me just to deal with it. I can’t.
That’s a sign of a lot of other things. MS Comes to mind but many other things. She needs to see her primary and be properly diagnosed
I advise my patients to consult specialists and primary doctors to rule out other conditions with similar presentations.
Has anyone ever complained of getting migraines? My daughter was 12 when diagnosed with Lyme disease. They gave her 2 weeks of antibiotics. Never had a tx since. She is almost 20 now and yesterday said she lost vision in one eye and a migraine started. She woke up today with one again..could this be the start of a flare up?
yes me i have crippling migraines that causes vomiting and they got horrible and more often after i got lyme and was misdiagnosed for way too long , but yes its horrible , im just on stuff to treat the migraines the nerve damage pain and i cant even have a full time job , and it sucks cause i was a certified vet tech , ugh i also live in CT which is the state where lyme ct is , where the name came from
I had a tick bite when I was under 11. (1972) They didn’t even know what it was. I got a standard week of antibiotics and the bullseye went away. Nothing else done. Fast forward to 1997 and I’m hit by a car on a crosswalk. I’ve spent 26 years diagnosed with arthritis, fibromyalgia, angry bowel, dizziness to point of falling, headaches, lesions on my brain, memory loss, can’t follow directions especially outside, slurring speech, blood shot eyes, lack of B12, pain in all my joints, light heat cold sensitive. Plus more. I’ve had 2 Lyme tests. Both negative. I’m in Canada on CPP Disability. Where can I go to get a true test to rule out Lyme? I still thinks it is.
Chronic Lyme or persistent Lyme do research now YouTube I find a wealthy of information and doctors there
Did your lyme present in the neck? If so, you may need an MRI of your neck. This buggers do a lot of damage to the spine. I have small fiber neuropathy and peripheral neuropathy. I have white matter lesions, focal slowing at the temporal lobe, and literally every single disc in my spine is either herniated or ruptured. My index finger on my right hand is deformed and thankfully it stopped there because I got treatment. However, my neck required surgery. I went from the neurologists office to the OR because I had such bad cord compression. Funny thing was, was the pain wasn’t as bad. He should have operated on 4 discs but he did only 2 so the hardware is slowly damaging the ones below which is what brought me to him in the first place. After surgery everything got worse and of course unless you go to an LLMD forget it. After awhile, the ATM machine runs dry. I find it criminal how lyme patients are treated. I no longer work and I didn’t get it for lyme disease but everything it did to me. Why do you have to literally lose everything??? LLMD’s charge soo much money too.
How do you get someone to do an MRI of your neck? I’ve been asking for YEARS because of all of the pain, neuropathy, headaches/migraines, etc. I’ve also been in car accidents in the past so many drs have told me to get MRIs & have my PCPs follow up on it but none ever do. I keep getting put on the medical carousel being told I need x treatment after finally getting different diagnoses after YEARS of trying (& going broke in the process), but then being told I can’t get x treatment until I’ve had y test done- when I qualified fir y and requested y be done before i make it into the specialists for x eval/treatment, then they bounce me back and forth taking so long and other health problems come up that take priority because we have so many chronic conditions that things get put in the back burner and drawn out so that we’re told we need to start from square one all over again. Doesn’t help that no one kept proper medical records, & thr few drs that did somehow lost the records that would have saved me years of pain and re-runaround. How do I get ANYONE to listen to me about the testing & treatments that I KNOW have worked for me in the past, & to try tests and treatments that have helped others when I become so ill I’m bedbound? I’m 40 and my life has been over for years already. Hard to keep up the good fight when constantly ill, severe symptoms and fatigue, & no care providers will help because I’m too complicated for them & they just brush me off as fibromyalgia.
Go to a Neurosurgeon! I just had MRI of my neck due to Painful Shooting pain from neck to back of head! He suggested -“if pain is coming from your neck, have you gotten an MRI of your neck + spine?”… Well – He was right- No one Ever tried to look into neck issues! Smart Dr!
Can I ask what treatment you had for deformed finger? This happened to me few years ago, suddenly while very ill with dental infection they wouldn’t remove tooth at time due to not using tools beginning of lock down. Said since it’s osteoarthritis.
I can’t find one Doctor here in Uk to even acknowledge the Lyme diagnosis I received from a private doctor (used funds up now) nor will they address diagnosis of other things in the report. Been laughed at, one consultant laughed and said yeah and where do you think you got that from sniggering.
I mostly leave these medics feeling deeply deflated and now when I’m ill/bed bound with terrifying symptoms I can’t bring myself to contact to them. I had a bullseyes swelling on leg from a tick bite in 90’s, health deteriorated ever since. Was told I need antidepressants (I was not depressed) labelled a hypochondriac, told things are anxiety. It’s all a long nightmare being ill but so much worse when you don’t know who to go to who will listen and get to bottom of what’s wrong.
Wish there was some sort of health cover here In Uk where you pay a small amount a month that would cover a functional medical doctor/lyme hospital. Maybe there is I keep searching for help
Since 2007 I was diagnosed with Lyme Disease, I’ve had Chronic late stage Lyme for 15 plus years, dealing with daily pain and problems arising all the time. Then in 2016 in Broome County NY I was diagnosed with Western Blot Lyme disease following a tick found on me. Now having problems getting any help from infectious disease dr. What can I do? I recently been taken on doxycycline 100mg that I’ve been on for past 15 years for my Lyme disease. Now I’m lost and don’t know what else to do.
Dr.Richard Horowitz Hudson valley NY 30 yrs of treatments over 17000 patients I’m suffering for 30 yrs and his research and treatment seems the best on my research or sign up for Lyme clinic at one of your local hospitals they usually have one in your state. Good luck and god bless you tube is a wealth of information on Lyme and coinfections that go along with it listen to Horowitz videos
Since 2007 I was diagnosed with Lyme Disease, I’ve had Chronic late stage Lyme for 15 plus years, dealing with daily pain and problems arising all the time. Then in 2016 in Broome County NY I was diagnosed with Western Blot Lyme disease following a tick found on me. Now having problems getting any help from infectious disease dr. What can I do? I recently been taken on doxycycline 100mg that I’ve been on for past 15 years for my Lyme disease. Now I’m lost and don’t know what else to do.
I had to go to PA for my Lyme disease because no one in Broome county would treat me or believe I had Lyme disease. I went undiagnosed for 6 years. Find a dr that specifically specializes in lyme and not just infectious diseases.
Do you mind telling me who the doctor was in PA? My sister-in-law has been in bed for two weeks with a flare-up and desperately needs a doctor to help her. She’s had chronic Lymes for eight years. Now her whole left side is numb and in pain. The ER is only addressing Covid cases. Thanks
I also would love the name of the doctor in PA.my 7 year old granddaughter is dealing with it constantly.
Dr Horowitz in my
Hi Kay
I just want to second the use of NAET. It seems totally nuts but I was treated for diagnosed celiac disease that no longer shows up in tests. It’s nuts. My son was treated for gluten intolerance and autism meltdowns and is a totally different kid for the last 5 years. It can’t hurt, it can only help. If you have hard to treat symptoms, it’s worth a try.
Chinese herbal medicine, acupuncture, homeopathy may help!!! Search in your area and find a Licensed acupuncturist, who understands Lyme disease, to help you!!!
Chinese herbal medicine, acupuncture, homeopathy may help!!! Search in your area and find a Licensed acupuncturist, who understands Lyme disease, to help you!!!
I went to see an acupuncturist who does NAET treatments. It has been amazing to see how she can identify something I exposed myself to in the previous two weeks, without her knowledge, and went downhill. She would then do a treatment on the items causing problems. I had to go see her a couple of times a week to be able to get up and go to work at all when I was really bad off. I have used some Chinese herbal medicines too.
I am a 34 year old woman, diagnosed with Lyme at the age of 10. I am currently having the biggest flare up after having Covid-19 about a month ago. Anyone else relate to this? What can I do to help ease the pain as I cannot take anymore Tylenol or Motrin. My body aches, my knees are swollen and headaches every morning and afternoon. I have had sever irritability as well. My concentration has gone down the drain. I hope it returns soon so I can continue with my schoolwork and career.
I have had patients with a history of Lyme disease who have flared up after contracting COVID-19. Both Lyme disease and COVID-19 can lead to an overactive immune system. I have found it difficult to treat the pain of Lyme disease without treating the Lyme disease. I suspect it is difficult to treat Post-COVID pain unless it is from Lyme disease.
I was diagnosed with Rocky Mt Tick fever 8 years ago. I was a runner before that. I can’t exercise or even walk 1/4 without problems. I get so weak I have to lay around for 2-3 days. Can’t hardly lift arms off bed. Feel like I could pass put but never do. Weak and foggy mind. This has happened off and on for past 8 years. I had covid, September 2021. I call these spells crashing because it feels like my body just shuts down. How many years will these relapses continue. If that is even what’s going on? Is Doxy the main way to treat relapse?
Love your testimony and your love for Jesus. I am so sorry for your troubles though wish I could help you. Quick meaningful prayer for you the feel better.
Lord Jesus please lift up Lisa and help find a way to manage these troubles.
I knew a 90 + year old and she had arthritic pain said she prayed to Holy Spirit and He helped her with her pain.
He is our helper. Lol
That’s how I feel; like I’m going to pass out and just can’t walk anymore. I feel so terrible . I’m really desperate. I’m on antibiotics niw did the last 2 weeks and I feel worse. This really is hell
Dr. Cameron, the truth is that 80% of people with Lyme disease have immune SUPPRESSION rather than the “overactive immune system” response, which only accounts for 20% of people who have Lyme.
I just had Covid 4 weeks ago and my pain is all back and swelling. Any advice 🙁
I advise my patients to be evaluated to determine if it is a delayed recovery from COVID-19, another illness, or Lyme disease.
Thank you. Here I am still in the same boat. Knees huge legs kill me. Joints toooo I was told to take doxycycline and Ldn
Night routine
I’m taking CBD for PAIN
Melatonin 5mg
Magnesium
Probiotic
Morning routine
4 ml glutathione lipossomal empty stomach
30 minutes after: Celery juice every morning 16 ounces
30 minutes after : lemon and water 16 ounces
No sugar
No gluten
No alcohol
Managing stress
CBD massagem
Sauna
I’m 70% better
I had Covid recently and it was awful. 3 weeks not getting better before using ivermectin and getting better rapidly thereafter. However I am far from getting back to normal. My Lyme symptoms have multiplied by 100. I was in the ER tonight Bc my shortness of breath was so bad I couldn’t hardly breathe. After several tests I was told I’m perfectly fine and it’s anxiety. I’m still awake and can’t sleep short of breath wondering if I will ever bounce back. I pray anyone reading this finds the inner strength to cope and continue to fight as I have. The real me and you is in there somewhere yet and every once in a while it’s revealed to us by a good hour or day which should be enough to find the will to live on… may God bless you with courage.
Night routine
I’m taking CBD
Melatonin 5mg
Magnesium
Probiotic
Morning routine
4 ml glutathione lipossomal empty stomach
30 minutes after: Celery juice every morning 16 ounces
30 minutes after : lemon and water 16 ounces
No sugar
No gluten
No alcohol
Managing stress
CBD massagem
Sauna
I’m 70% better
Danny, I hope you are better. I needed to read this. I’ve been in remission since 2019 and was just hit with a huge flare up out of nowhere. I had Covid in February and also April of last year. I’m not sure if that’s what has brought this on, but I’m alone of pretty down.
I’m honestly so grateful to have found this group. I’m dealing with my first flare, and it’s awful. I had a few months of a symptom free, “normal” life and the last 2 weeks have been rough. I always say I don’t wish this on anyone! Prayers for all
Thank u I really needed to hear this. Im not the only one that feels lost and not himself with ghis stupid lymes disease thank i
I was diagnosed with acute Lyme disease and possible Rocky Mountain (?) fever over 8 years ago. Unfortunately, I have anaphylaxis allergies to all the antibiotics that could’ve helped me. I am also allergic (anaphylaxis) to ALL NSAIDs. There was an attempt to desensitize me with my allergist, but it was stopped quickly.
There’s no words to describe the pain …. Migraines are beginning to be more frequent every month, usually brought on by no sleep, I can’t sleep when my muscle and nerve pain are completely unmanageable …. Although I have never been tazed, sometimes that’s what I imagine that’s what it’s like. I recently moved to SC and I don’t think any doctor believes or understands. I need medication beyond Tylenol to be managed but pain meds do not seem to be available. I am 60 years old and now I spend 90% of my time in bed. I live full time on a lake, jetski, dock and a fun house… There’s no fun here. When my pain used to be managed I lived in life, that was fun.
The only time I was offered pain relief here, the doctor at the urgent care actually offered me toradol – I told her that’s an NSAIDs, she did admit that she already knew that but offered it anyway. Unbelievable
Night routine
I’m taking CBD
Melatonin 5mg
Magnesium
Probiotic
Morning routine
4 ml glutathione lipossomal empty stomach
30 minutes after: Celery juice every morning 16 ounces
30 minutes after : lemon and water 16 ounces
No sugar
No gluten
No alcohol
Managing stress
CBD massagem
Sauna
I’m 70% better
I don’t know if you had reactions to taking those meds but didn’t have an allergy test that identified them? You might want to consider povidone, an inactive ingredient that is in almost every pill, every NSAID I’ve looked at, and the local ER told me they stopped using Betadine because so many people have the Betadine or povidone allergy. But people take it in most of their pills. I did the Elisa act delayed lymphocyte allergy test I mentioned above, it identified things I never would’ve known were a problem, avoided them, but when I slipped up by having a medicine by a different manufacturer, I realized Povidone (which goes by numerous other names too) makes me tired, increases pain, muscle spasms, need to nap, and can affect my mood. Daily med NIH website lists medications and manufacturers where you can see what the inactive ingredients are, and there are pharmacies that will compound your medication, making it out of just the pure active ingredient. Unfortunately my insurance doesn’t cover that. I hope this can give you some help.
Hi I have had burning feet ,sore thumbs ,left arm carpel tunnel symptoms that come and go,butt bones hurt when I sit ,lower back ache ,double vision in left eye ,corrected somewhat with prism in my glasses ,legs ache,knees ache ,low energy,brain fog ,tired , anxiety that’s bad when I wake up better at the end of the day, facicualations in my calf mussels,they want me to get a MRI of my back again ,said I had some stinosis in my back on the last one I had ,get a MRI of my pituitary gland numbers a little low ,had many blood test for Lyme and confections ,had some done through urine showed something but not enought for them to ever put me on antibiotics more than 10 days ,,tried vitamin B shot’s In my feet and a tins like unit did treatments to my feet ,it was a new treatment for neuropathy,did not do anything ,Been using benadryl 3 times a day and on Norco for the pain ,just tried the Benadryl for the last couple days ,it’s seems to helping my feet not sure why ,heard it’s not good to stay on it for it causes forget fullness and I don’t need that more memory problems,so we’re do I go from here ,tried several homapath things ,some days I can run up the stairs and some day I feed like 100 and I am 61 years old very active lift weights and take walks with my dog ,tell me it sucks trying to cure yourself when I have great insurance but none of them want to pay for Lyme treatment from a Lyme doctor and there’s nobody in southern Virginia that I can find to help any suggestions would help ,I keep hearing about a rife machine ?
You have basically just described the same way I’ve been feeling for the last two weeks. I’m in northern VA and had Lyme when I was 10 and then again in 2015. I did the antibiotics and was told I was cured. Since then I’ve had internal vibrations in my head and lower back that come and go. For the last 2 weeks, I’ve had some numbness in all for limbs and face, fasiculations all over my body, I can’t think straight or grip my pen. My left calf rolls into knots. Sometimes I can walk fine and sometimes I limp. I have a MRI and EMG scheduled for next week, but I’ve also made an appointment with Dr. Chu in Fairfax. He is not a traditional doctor but uses muscle kinesiology and natural supplements and diet to treat all sorts of ailments. I’ve never been to him, but at this point I’m desperate for the symptoms to go away and I’ll try anything to get my life back.
Does anyone start itching really bad with extreme exhaustion and brain fog with their Lyme flares? What helps the extreme itching? I’ve tried everything, nothing helps! Benadryl, itch creams, sprays Oatmeal baths, Aveno lotion, even prescription RX creams, I itch like crazy. Skins bloody and scabbed from itching. Don’t say don’t scratch! Impossible.
My doctor is treating the itching that accompanies my Lyme flares with a nutritional supplement that I take twice daily. It’s called Mirica, contains palmitoylethanalomide and luteoline and is manufactured by Young Nutraceuticals. Finally, I have relief from constant itching. Good luck!
Allergies increased significantly for me from Lyme/coinfections and can cause brain fog. A Dr recommended Alka Seltzer Gold (not Cold), which helps get a reaction under control. I have also been told that your heart rate increases 10 to 20 BPM if you are exposed to something you’re allergic to, but I wouldn’t be surprised if yours increased from the discomfort and irritation, but maybe you can find some answers looking at that. The Elisa act delayed lymphocyte allergy test, from Dr Jaffe is very helpful, although it’s expensive and You have to pay out of pocket upfront. My insurance did reimburse me once.
I am a cancer survivor, this is what happened to me when I found out I had cancer. Super itchy all over my body.
Do you happen to have digestive issues? SIBO with a Lyme infection is notorious for causing crazy itching …and always in the same areas like a pattern. Different people are affected with itching in different areas. If gut issues are a problem ….the die off and recreation of microbes send out toxins and some people itch. Just a thought.
I HAVE THIS BULLEYE RASH ON MY INNER THIGH AND MY LEFT EYE SWELLS UP LIKE A STY IN IT AND RASH SPOTS MY DR JUST PRESCRIBED DOXYCYCLINE TWICE A DAY TOOK LABS FOR LYME AND LUPUS MY NECK HURTS NAUSEOUS BODY OS KILLING ME FATIGUE I BROKE OUT WITH THIS RASH THREE TIMES NOW SINCE FEB IT IT HES ITS PAIN FULL PLEASE HELP I CAN SEND U PICTURE OF THE RASH
I will say a prayer for you Danny! I have a long list of family members I pray for God to heal them as well! Hang in there!
I contracted Lyme’s Disease 5 yrs ago. I was treated with antibiotics for several months and eventually was better. However, every late spring, I have a flare up which mainly consists of extreme fatigue. I weather through it with antibiotics but it takes a month. I was under the false impression that once you contracted it, you have it for life only that it becomes dormant. My Dr. recently advised that that is not the case. That said, I still get wacked every year in late May-Early June.
Some doctors are willing to treat only if they assume it is a new infection. I have seen new infections and recurrences in my practice.
How are the signs and symptoms of FM/CFS delineated from signs and symptoms of Lyme Disease (and/or co-infection)?
What treatment protocol treats both?
I see someone’s repeated posting of their regimen… What does the celery juice do to help? What does CBD do to help? Do they cure or do they mask?
The signs and symptoms are similar. I like to include antibiotics if Lyme disease is a consideration. I have some patients who appear to benefit from CBD. I do not know enough about celery juice to help you.
Writing this out of desperation. I literally feel like I’m dying without a hint of exaggeration. Lyme is killing me. I truly feel like my body is giving up. I can’t do this anymore more. I have no quality of life. I just live in pain and barely have the energy to shower. My face keeps blowing up because suddenly I’ve become allergic to everything, I have to lean on something to stand, my memory is completely shot. I can’t even write anymore because it hurts. My fingers hurt and my head is spinning from migraine and dizziness. Can anyone offer any advice please?!!!
I have patients in my practice with fasciculations due to Lyme disease. You may not even find the cause of fasciculations. I advise my patients to include a doctor familiar with chronic manifestations of Lyme disease. I also encourage my patients to seek second opinion if you they remain ill
That’s exactly where I am now. Just started the antibiotic for Lyme 5 days ago and I actually feel worse. I’m so desperate
I had a really bad case of limes disease in 2019. Undiagnosed for six months. I felt terrible. Finally, a doctor prescribed me cefuroxime. After a couple of months, I began to feel better thank God! I got about 80 to 90% better in four months. Then I read this study from Johns Hopkins university on which herbs killed lymes bacteria in test tubes.
https://rawlsmd.com/health-articles/real-talk-new-johns-hopkins-study-7-herbs-can-kill-lyme-bacteria
I went on Amazon and found a supplement with many of those herbs. I have been on that for the last couple of years off and on and most of the time I would say I’m about 90% better. Hang in there! It has worked for me.
Could you share what you are using from Amazon? Thank you
I don’t know how to get a reply back to this but where what herb did you find on Amazon
My husband has pain and stiffness to the point of immobility in his shoulders. How every the thing we can’t figure out is that the immobility level will change daily and will pendulum back and forth between should. It’s so bad sometimes he has trouble brushing his teeth and things because his arms just don’t function. Could this be lymes?!
Any help is appreciated! This has been going on for a couple weeks now.
I advise my patients with atypical presentations to include a doctor experienced in treating Lyme disease in their evaluation. There are often other symptoms that help with the diagnosis. I also advise working with their primary to rule out other illnesses.
So, when there’s a flare up, should you get back on doxycycline? Or what is suggested cuz I have just about all those symptoms at the top plus random hives and heart burn, etc.. I’m probably going to get back on the doxycycline either way because since my initial diagnosis I’ve had hundreds of different bites, ticks, mosquitos, bees, who knows what else, and my bites seem to itch for months!!
My heart problems stopped when i completed eradicated all mammal products (look up alpha gal syndrome).
I myself was diagnosed with Lymes in 2020, after years of body pains, knees swelling, and fatigue. I even walked with a cane, my knees were so bad. After seeing different Drs over the years, for what I thought were just aches and pains, and arthritis, one orthopedic Dr. Decided to have me checked for Lymes. Lol and behold, I found out what was going on with me, but the damage was already done, as I have neurological Lymes. I had 30 days of PICC line antibiotics, that I had to have done at the hospital daily. Forward to June-July 2022. I was feeling extremely fatigued, run down. On July 4th, I could hardly move, I was so tired, with pain in my chest, just behind my rib cage. I went to the ER on July 5th, and after numerous tests, blood work, CT scan, etc , I was found to have Babesiosis. This nasty parasite had ravaged my red blood cells, and my white blood cell count was through the roof. I had a collapsed lung, pneumonia, and the pain I was having behind my left rib cage, was from my spleen working overtime, trying to fight of the parasite that was literally killing me. My spleen became necrotic, and was dying. I was in ICU for 5 days. I couldn’t go back to work until what was left of my spleen could heal, as too much strenuous activity could have caused it to rupture, and bleed out. As of now, I still have pain where my spleen is, and I have flare ups, where I become so fatigued I could fall asleep anywhere, at any time. I have brain fog still, and have dizzy spells, which is scary. I was told that I should apply for disability, as it is affecting my work. All this, from a tick, no bigger than a grain of sand.
I am sorry the doctors did not diagnose Babesia earlier. I advised my patients to look again for a persistent infection.
I have been diagnosed again for 3rd time for having Lyme disease i hurt all over like I been beat with a baseball bat or something. The weird thing is I test positive for acute Lyme the western blot not the chronic which the doctor said is weird because I have already had it and been treated for it since 2021. So here I have to take doxycycline again and I was so sick the last time I took it in August of 2022 even though I ate before taking it. Any suggestions on how not to get sick this time I really was so miserable and on why I’m testing as acute Lyme and not chronic? Thank you
I have seen IgM recur even if there is no reinfection. I have had to use clinical judgement to make treatment decisions. I have advised my patients to eat with doxycycline to better tolerate the drug. I advise them to take their minerals away from the doxycycline. I have also found changing to another antibiotic or adding treatment for Babesia better tolerated and helpful.
My patients often have symptoms that vary over time. In some cases, they swing from crappy, crappier to crappiest. They “feel good” when their symptoms are no longer at their crappiest. I advise my patients to consult a doctor with experience treating Lyme disease.
I had Lyme disease in 1993 . I just started getting the symptoms the past 2 years. It can be debilitating at times but only last one day. I’m looking for suggestions on how to treat this disease.
Hi,
I am so grateful for this conversation!
I had the Covid vaccine and Flu vaccine compounded by exposure to a virus two months ago.
I have had all the symptoms of Lyme flareup but did not realize it could be that. I was treated by Dr. Cameron and Dr. Phillips years ago.
I am now living in Seattle…..not sure if I should restart Doxy.
Any info would help. There are no Lyme specialists in the Seattle area.
I am sorry to hear you are having problems again. You may find doctors in your area through networking with other doctors or checking directors including Global Lyme Alliance and LymeDisease.org
Dr Susan Marra
How do to prevent Lyme flare when in a stressful situation that you can not help? And why is it that when you go through a stressful situation it’s seems days or weeks later the flare starts?
I find it can be difficult to determine the cause of a flareup.
Accupuncture has really helped with the pain but you have to find someone who knows what they are doing. I find Chinese accupuncture works the best.
And you should feel a lot of energy in your body during sessions.
I got sick with a virus and ended up with severe joint pain.. unfortunately I had kaiser at the time and they did some routine tests that showed up negative. They wouldn’t refer me to Stanford or another specialty doctor. Fast forward 7 years and I no longer have Kaiser and have been diagnosed by a functional medicine doctor as Lyme. He had to do a lot of non traditional blood tests. Im sure a lot of damage has been done in those 7 years.
I always encourage my patients to include an antibiotic as part of the approach.
Has any one gotten histamine intolerance from Lyme?
My son was diagnosed with Lyme disease 2x (once at 5 years old, then again 10 years old). Both times were treated with antibiotics. He’s 16 now, but we’ve had so many issues and I’m convinced it’s related to the Lyme disease – but I’m being told there is no way for flare-ups as he’s been treated at the time. Can a flare up happen even though the original infection has been treated with 20-days of antibiotics / orally taken?
A third of individuals treated for Lyme disease were sick on years after treatment in large cohort studies. That means two thirds did well. I encourage my patients to look at a persistent infection or new infection again.
I have patients who have been successfully treated after 20 days of treatment. I would add a doctor with experience treating chronic problems related to Lyme disease to your team of doctors.
Hello all,
This question concerns the possibility that stage III metastatic cancer could facilitate a lyme flare 20+ years after lengthy treatment with Rocephin.
2000: My wife had the lyme bullseye rash and positive titers, but suffered for 8 years before a Florida Dr finally agreed to treat her with Rocephin IV. She started 2 grams a day for 11 months via a Groshung catheter. (Basically following Dr Burrascono’s treatment protocol of the time). The fatigue, arthritis, confusion, and pain finally began to go away and life started to resemble normalcy.
2009: A melanoma was surgically removed from her calf and a groin sentinel lymph node was clear.
Late 2022-2023: Groin lymph nodes were swollen and painful. Metastaic melanoma was diagnosed. Apparently unsuccessful Keytruda immunotherapy followed, as did 2 lengthy surgeries to remove two-dozen lymph nodes. She has also had several PET and CT scans with contrast. Surgical pain and now lymphedema prevail.
Tonight my wife had an epiphany: The fatigue, arthritis, confusion, and pain she has now STRONGLY resemble the worst of her lyme days of 20+ years ago.
What do you all think? A melanoma cell hid for 13 years then found a blood vessel and took root.
Could a little bastard of a lyme spirochete hide for 20+ years, only to spring back to life when her immune system was too weakened to fight it off?
Would appreciate your thoughts and experiences.
Wishing you all happiness and good health,
Bob
I have seen cases where I have suspected Lyme disease after stress, illness and an accident. I suspect the immune system response to the event allows for a recurrence. It could also be that the illness is pushing the same immune response pushed by the Lyme disease. I advise my patients to work with their other doctors to rule out other medical causes. All the best
I went tothe ER yesterday because I had been feeling really lousy for 2 days Flu like symptoms, achyness, headaches, shortness of breath, fatigue, low grade temp. I took Tylenol last night and an hr. later I had a 101.4 temp. I also have swelling and tenderness on the left side in my groun area. I’ve basically been in bed for 3 days now. I’ve had Lymes 3 times in my life, most recently was about 10 yrs. ago. That was the worst one. I had severe chest pain, excruciating. Thought I was having a heart attack. I had a chest x-ray yesterday which was fine and the doctor told me most likely I had the flu but he could not be definitive. Then I realized these were some of the same symptoms I had when I had Lymes. I just wonder if it could be a Lyme fare up? Any thoughts? I’m 66 yrs. old
There are so many potential problems. I look for other issues first in patients i take care of.
I was diagnosed with l lymes didease about 3 yr ago. I went thru antibiotic treatment. I now had back sugery to have a spinal cord stimulation device implanted for RSD and had bone growth removed that was squeezing my spinal cord. Can the lymes disease be making my recooperation from this surgery more painful and slower healing?
I have not seen research in this area. I have seen Lyme disease increase the severity of pain, likely through a ramp up of neurotransmitters
Approximately 7 years ago I tested positive for lyme disease after experiencing a wide variety of the symptoms listed above. I took the oral medication prescribed but then didn’t test again to see if it was truly gone. Since then, the symptoms have returned in waves and I recently tested again and it came back positive.
Do you think I had it the whole time, or could it be PTLDS (Post Treatment Lyme Disease Syndrome)?
I have patients who meet the clinical criteria for PTLDS. PTLDS can be from a persistent tick-borne infection. I have patients diagnosed with PTLDS who do well with antibiotic retreatment.
I am to the point of ending it all so sick of being sick … decades of it
Suicidal tendencies have been described in Lyme disease. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5546819/ You should see a doctor or the ER. You could also call the suicide hotline https://988lifeline.org/?utm_source=google&utm_medium=web&utm_campaign=onebox
I had Lyme disease @ 20 years ago with the classic symptoms and was treated for it at that time. Thirteen years ago I acquired an insect bite and ended up in the hospital for 14 days with a developed bacterial meningitis. The report that I read basically said that the insect bite triggered dormant lymes in my system resulting in the reaction. Just recently, probably the last 2 weeks, I am experiencing the same symptoms that I had thirteen years ago with stiffness of joints, limited mobility, fatigue and a mild headache. I spend a lot of time outdoors and have acquired several mosquito bites in the last month. I am wondering if there is any connection with mosquito bites and dormant lyme disease.
I have not seen any good information on mosquitoes. I would advise my patient to include a Lyme disease evaluation rather than focus on the mosquito.
They have not done many studies on Mosquitoes. Most of my patients never saw the tick. I advise my patients with a return of symptoms to include a doctor with experience treating Lyme disease in their list of doctors.
Have you ever heard of tickborne illness flare ups that occur 4 or 5 times every day? (I’ve had Lyme since 1978, dx 2010, tx 9 yrs. Borrelia burgdorferi, babesia microti, bartonella henselae, multiple other likely reactivated infections. Prior to tx and during, I had afternoon flares in symptoms. Moderate improvement after 5 mos IV abx (for meningitis) followed by herbal/supplement regime to quell inflammation). Now flu symptoms for 6 mos, every day, about every 4 hours. I had a Lone Star tick bite a few days before this new illness. The tick tested negative for any pathogens, but I’ve read that a bite can mobilize existing residual Lyme. Some symptoms may be from LPR, as Lyme has affected my gut. But the periodicty of it, not meal-related, has me stumped.
I have patients with periodicity but the pattern differs from person to person. It is unclear why.
You should address this question with my office at 914 666 4665 in New York. You should also work with your primary doctor to rule out other conditions.
You should address this question with my office at 914 666 4665 in New York. You should also work with your primary doctor to rule out other condidtions.
I was so happy to feel amazing after taking the protocol prescribed by my LLMD. I enjoyed nearly 5 years of remission? cure? Then last spring, I experienced debilitating symptoms of Lyme again. After visiting my Lyme Literate Medical Doctor – and doing the Western Blot.. I had very high positives (all) in the IgM and only 3 in the IgG (Negative by CDC?) confusing, but I think it indicates I was rebitten? I was so happy to be Lyme symptom free for 5 years. Thank you LLMD and the protocol that was so cheap and non-herxing!
I have had patients whose IgM western blot have been positive during Lyme disease exacerbations without evidence of a new infection. I have had to approach them a a new infection while considering the IgM may be related to a previous infection.
I have recently been diagnosed with Lyme disease and I’m on short-term disability now my hands I have renoids or rain noise I don’t know how to pronounce it poor circulation hands and feet is now I put my hands are cramping up so bad and they hurt so bad and like if I’m driving on the road I got to pull over like fast because I don’t know it’s like somebody’s tearing my hands apart my nurse practitioner do I have not yet seen a doctor she keeps telling me I can go back to work I can go back to work listen I have to use my hands I would love to go back to work like right now what should I do about getting a second opinion and will that work for my short-term disability because I’m hoping to get stronger and better I’m sure they will eventually just they’re not ready yet with the rain noise on top of the lines disease I don’t know if anybody’s ever had this it is very painful very very painful plus yeah I mean losing my vision and confusion and all that stuff they only gave me 14 days of supply of antibiotics for Lyme disease to get paid because this nurse practitioner keeps messing up my paperwork what should I do cuz I don’t have the money to get she gave me another 14 days or 21 days of antibiotics and she told me that there was a prescription and she gave me for my rain noise okay great I didn’t know there was one that they told me there was nothing they could do for it before I don’t know what to do here and she’s saying I can go back to work on the 14th that’s just one this Wednesday that’s two days away and there’s no way there’s no way I can’t I’m going to lose my job because this lady doesn’t want to listen to me she hasn’t even made eye contact let alone look at my hands and I’m confused on what to do here I don’t want to lose my job I drive 2 hours away everyday 2 hours one way if my hands cramped up on my drive I’m going to have to pull over I’m going to be late for work boom fired that alone I’m fine to top it off I put art on material there’s no way I’m going to be able to do that that consists of using your hands all day long
I had my 2nd round of lymes about 11 years ago. I have suffered a lot of pain. When I get sick my whole entire body hurts so bad. I have such bad aches. Gets hard to walk. Chills and then sweat so much. My docotors have never taken me serious when I bring up my lymes. They refuse to test me for it. But living like this is awful. My body is in so much pain. Even when I’m not sick my body just doesn’t function like I want it to. What should I do?
I have also never got antibiotics when this did occur.
I have patients who were not able to get treated for Lyme disease until they were seen by a doctor with experience treating chronic manifestations. I have seen patients who were never treated for the tick borne illness, Babesia.
Omg I get these feelings and see the parasites and know one believes me
And one positive Lyme and being treated again for a second bullseye rash been in Aug. And I am in so much pain, my eyes and brain are being affected I can feel it hearing ringing blurred vision feeling of formication and tactile hallucinations, swollen gut. Burning aching joints with occasional itching. Burning tingling feet hands shins and hips
It is true hell and ruining my relationship with my family and partner. Brain fog. A gallon of milk feels to heavy it causes burning. Hell and help.. Do I need to get a second test for Lyme and other confections.. What are other CO infections
I had Lyme about 3 years ago. I was treated immediately with doxycycline once I noticed the classic bullseye on my thigh. Symptoms were severe fatigue and joint pain initially (pre-treatment), but once I started taking the doxycycline the flu like symptoms and excruciating painful chills and hyper sensitivity to cool temperatures were unbearable for a couple days. The symptoms then faded. Every few months I have a night where the excruciating painful chills return for several hours and I get soaked in sweat. This has gone on every few months for 3 years. I am wondering if it is still the result of the lyme disease, even though I was treated with Doxycycline. Any feedback would be appreciated. The chills are different. It’s like my nerve endings are on fire.
Greg
I have had patients who have improved with re-treatment. I have had patients with Babesia, a tick borne parasite, that can lead to sweats. Doxycycline is not effective for Babesia. Some doctors disagree with retreatment.
I appreciate your response. Are my episodes related to the original lyme, and what would you recommend?
I have patients with new infections and what appears to be a relapse. I have had to individualize my treatment.
Hi.I just found out I have lyme. I was bit almost 3 years ago , had the bullseye rash but no other symptoms til 4 months ago. I ordered Buhner healing lyme disease second edition & going to treat. Wishing you healing.
I have advised my patients not to overlook antibiotic treatment for a tick borne infection.
The uti can be from the spirochetes in your bladder.
I have not seen a UIT infection from spirochetes I have seen dysuria including interstitial cystitis.
I know exactly how you feel. Chronic lyme is real. Insurance needs to cover it. People are suffering, bedridden, & we need to be heard. I am going to to try the buhner protocol & I just spent $245 out of pocket for the herbs. It sucks paying all this money for something we don’t even want.
I wish you healing & remission soon♡
hello i’m an 18 year old who had Lyme when I was about 11 and so on I took the antibiotics. Nothing worked. It got so bad that I got a PICC line in my arm to spread medicine though out my body. It seemed to of worked.
Years later I’m experiencing brain fog, fatigue, loss of sleep, and do not feel motivated to do anything. Something’s wrong and it pray it’s not long term affects of Lyme cause it’s not curable.
I advise my patient to be evaluated for a Lyme disease infection or relapse while also ruling out other illnesses.
Thanks for being here ! You are correct in everything you say about ‘flares’, it is just great to see it in print. Lyme disease survivor 29 years and going.
Hi I had same issues every 5 years lasting about a 1-3 months, fatige, small joint paint, knee pain, neck stiffness, headeaches, dizzyness, and very blurry vision on left eye, also i have memory and speach problems. However this year starting in September It was so bad I went to doc they run test Elisa and WBlot and IGM was present 21.7 and osp25 @56 and vise @6 I also went to hospital to get lumbar fluid tested and they did not find any igm or igg, I did not start any treatment yet, my question is Could that be a lyme disease that went untreated for years or is something else not Borelliosis !? I dont have iggs in blood.
Some Lyme disease patients do not have a positive Western blot test. Only one in ten chronic neurologic Lyme disease patients had a positive lumbar puncture. There are tick borne infections including Babesia.
Hello, my name is Jason in 2008. I noticed a tick embedded underneath the head of my penis. I guess when I saw it I pulled it off not thinking nothing of it. I was working on the concrete industry then. One night in the shower few nights after I pulled it off. Well I developed a hard ring all the way around right under the head 1/8″x1/8″ I went to bed and then at 3?? In the morning I woke up in pain a rash everywhere. Didn’t have primary Dr. So hospital was my only help. Needless to say like clockwork every 3weeks at 3?? In the morning. Pain rash. Couldn’t move hardly. Well that went on. The 3weeks at 3in the morning. 3 months. Finally the hospital told me what I had was Lyme disease. From a deer tick. Well they gave the antibiotics and to follow up with my Dr. Well after the script of antibiotics. I didn’t get the flare up rash and the pain of it. But then in 2014. One night after working. I woke up at 330 400 am and I so much joint pain burning sensation, But no rash. So I went to pain management Dr. And he just said I had scar tissue irreversible damage to my hands and elbows. They my hands and arms felt like the skin was burning off of me. Tingle and itch. So now I’m 51 yrs old. And have been dealing with. My hands tingling hurt,fatigue ,shortness of breath, but I tolerate it, ughh , blurred vision every now and again. Neurological dizziness, brain fog, for which they called. Vertigo. What do I do I just watched a documentary on Lyme disease. I didn’t know that it could cause all those symptoms. And I wonder if the ringing in my ears is caused by it. But they called it tinnitus. Please I’m a little concerned now I never get concerned about my body. Because Its always naturally healed itself. And I’ve put it through more than what 20 people would put there body through in a lifetime. I always told everyone when they would ask me how did you heal how did you get over that? Because I never been to a regular Dr. Last time I was 13yrs. Old. Or a dentist. And I have all my heathy teeth. I just simply tell them I’m a genetic freak. But for real now I’m seriously need your thoughts and tell me where and what I should do, per I still don’t have a regular physician please. Thank you. Hope I hear from you.sooon. everything in this nothing is stretched exactly the way it happens
Hi. I was diagnosed with Lyme a few weeks ago and have been sick for months. I’m 2 weeks through a 4 week antibiotic treatment. And had been feeling so much better but I got the stomach flu this last weekend and ever since my symptoms seem to have flared and it feels like my body is back on overdrive. Do you think this will be a constant thing anytime I get a cold or flu?
Also I have noticed the entire time that I get heart palpitations when doing physical exercises that are beyond walking or slow movements. When I got the stomach flu I had heart palpitations for basically the entire time my body was fighting the infection off (so like 2 days). Is this common? Should I be concerned?
Thank you!
My Lyme patients often have flare ups of symptoms after initial gains. In some cases these patients also have Babesia which is a tick borne infection requiring atovaquone. I also have patients who have autonomic issues (e.g. POTS) related to Lyme disease where they have tachycardia and stomach issues.
I’m uninsured and at a loss for what to do right now. I was tested for lyme at patient first, it came back negative. I KNOW I have lyme. My f-ing dog tested positive and he only got bit once. I noticed before this flare up, that I think was triggered by a viral infection(come to think of it, I also drank a couple of days before too), the place where I was bit by a tick a year ago started to itch again. Anyone else notice that? Can you take another round of antibiotics for a flare up? Any advice is appreciated, I’m gonna try cutting out beef and processed sugar and it looks like it’s fish for dinner tonight. Thanks in advance for any insight or advice.
I have had Lyme disease patients who have had a flareup of their Lyme disease after a simple virus infection or COVID-19. I have also had patients whose flareup was due to a Herxheimer reaction after taking an antibiotics or an unrelated infection or for COVID pneumonia.
Had Lyme over 30 yrs ago. It was misdiagnosed for about 5 years. MD had me on antibiotics for over 3 yrs, and changed around the meds a lot so my body wouldn’t get used to it and render it ineffective. It went into remission but I believe it has flared up. Symptoms have gone on for awhile now but no one believes me.
I hope you find a solution again.I find that treatment for Babesia has been helpful.
I’m 62 years old and was diagnosed with Lyme Disease in July 2023, after my rheumatologist identified (what I thought was a blood clot) a erythema migrans rash on my upper thigh. Initially I was treated with Amoxicillin for two weeks (due to a previously perceived intolerance of doxycycline). However, after the treatment, I started to have increased joint pain in neck, back, and knees. My rheumatologist prescribed a course of prednisone, which tamp down the symptoms. But a couple of weeks later my knee was hurting worse, and it swelled with fluid. I saw a sports medicine doctor diagnosed it as Lyme Arthritis. at that point, I was willing to try doxycycline at his recommendation, which I took for one month, my knee was also injected with a steroid. This was well over the initial diagnosis at the beginning of July. My rash never went away, fully. In October I had Covid (second time), then, had a bad respiratory infection in December. Recently, the erythema migraines rash has deepened in color and exhibited an outer partial ring. My doctor is retesting for Lyme. The preliminary test result is equivocal. I’m certain he’ll run the test again within 14 days. It’s hard to decipher whether my symptoms have resurfaced, because I have a systemic, inflammatory, autoimmune disease, though I remain active. I’ve had an uptick of dizziness, which I routinely suffer from due to a damaged vestibular system. It seems strange that my rash never went away. In my 62 years, I’ve never previously tested positive for Lyme disease. This is all new to me— not in a good way! Would doing another round of doxycycline be recommended? Should I have some further testing, for instance, a biopsy? Thanks in advance for your response.
I had Neurological Lyme after being bitten by a tick 5 years earlier and not diagnosed. I was finally treated in 1999 with 600 mg Zithromax followed by IV rocefen for 3 months. I have not had a relapse and never needed to go on antibiotics since then, though at times sx may appear. I work hard at keeping my immune system healthy with exercise, sleep, diet and minimal stress.
I recently had my first shot for allergies (dogs/cats/trees/grass) and I had an extreme hypersensitivity reaction with a red/mottled rash all over my body especially trunk and myalgia. I was put on 6 day Medrol dose pack. The rash dissipated, but I can’t sleep because of persistent back pain and leg pain that is severe, worse at night.. Could this be due to relapse of Lyme or an immune response issue to antigen-antibody (i.e. Type III Hypersensitivity Response). Where do I go from here to get relief? Any ideas?
I got Lyme disease and was never anywhere near where ticks are. I never saw one or had a bite or rash. My thumb knuckle was achy. The doctor asked if my fingers were always swollen. I said no and I didn’t know they even looked liked they were. Blood test and found out I had Lyme disease and was put on antibiotics for a week. They said it was gone. From reading subs of your comments; I’m wondering if it cured me or is still there or can come back if not bitten. I am exhausted and fatigued a lot. Had a time off intense migraines but went away without treatment. Still tired a lot. Now, hard to remember things! During conversations, trying to remember things, trying to name an object that everyone knows obviously. Something really simple to recognize. So, what are your thoughts, medical people, and experiences, patients? Thank you!
I have a question about Chronic Lyme with regard to a flare. If treated the first time with a combination of drugs, would a chronic flare need to be treated with the same combo of drugs?
I have patients who do well with the same combination and some that don’t. The spirochetes can’t learn much as they don’t divide as fast a viral infection and they don’t move from person to person. It may be related to the persister hypothesis.
I was diagnosed with lymes disease as a child (13 yrs old) I am now 43 and having the migraines, body aches, fatigue, sleep pattern all out of wack, and tingling in right arm and hand. I’ve been sick since the diagnosis but this just reminds me of the lymes disease symptoms. I have seen a dr and informed them of prior diagnosis but seems like thats just being ignored. Currently taking iron and Vitamin D supplements but nothing seems to be working.
I have Lyme disease patients who have been reinfected leading to the same symptoms. My patients don’t forget that feeling. I encourage my patients to include a Lyme disease evaluation as part of their workup.
First, thank you from the bottom of my heart for all the work you’ve done to help people suffering from tick-borne illnesses!! I’m wondering if you’re familiar with the new the AcuDart Tick-Borne Disease Test Panel. There’s no need for a doctor’s order and they send it to Igenex for the actual testing. And it’s quite a bit less expensive than Igenex’s immunoblot test panel (even at its current special pricing). In your opinion how do the two compare?
Thanks for your encouragement. I am sorry to say I have no experience with test.
I had a tick bite that caused a bull’s eye rash about 13 years ago, but shortly after I developed breast cancer, then frozen shoulder, then Guillain Barre. I was tested for Lyme but it came back negative, but it was only after I had developed GB, so a few years had gone by. I now have problems with my upper spine and joints. Just wondering whether the bull’s eye rash is proof positive of Lyme and whether at this point I should have it retested and treated.
A Bull’s eye helps establish my patient had Lyme disease but not whether they still have it. I have patients who have been diagnosed with cancer as they are being worked up for Lyme disease that uncovered during the workup. They are treated for Lyme disease and cancer.