What does a Lyme flare-up feel like

What does a Lyme flare-up feel like? Ask the Lyme Doc.

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

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

 

Comments

233 responses to “What does a Lyme flare-up feel like? Ask the Lyme Doc.”

  1. Joel Halaszynski Avatar
    Joel Halaszynski

    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

    1. 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.

      1. Sherri Leyen Avatar
        Sherri Leyen

        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?

        1. 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.

          1. Jane Avatar
            Jane

            I had positive Lymes 5 years ago and 4 wks antibiotics and seemed all fine then in July\Aug 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!!!

          2. Stephani Avatar
            Stephani

            My symptoms greatly improved after starting homeopathic treatment with a functional medicine practitioner. I see Dr. Hirani in Culver City, California

          3. Heather Mason Avatar
            Heather Mason

            What does your treatment consist of if you don’t mind me asking. If you don’t want to share, that’s ok. I was diagnosed with Lymes about 2 years ago and was treated with antibiotics for 4 weeks. The symptoms never fully went away, because I was diagnosed with Long haulers from COVID as the symptoms overlap. I was treated later in the disease, and still suffer from severe fatigue, joint pain and swelling, brain fog and memory issues, numbness in my hands, muscle pain and issues sleeping. Thanks for any insight. 😊♥️

          4. Lyme and long covid can look alike. I have had patients in my practice thought to have long covid who did well with retreatment for Lyme disease and co-infections.

          5. Shayle Hirschman Avatar
            Shayle Hirschman

            Too bad I didn’t know about them 2017 when I lived there and couldn’t find a doctor that could diagnose my Lyme or Fibro!

          6. Mike Avatar
            Mike

            I had my primary doctor refer me to an allergist. From there he identified that I had an allergy to beef and pork which is prominent in people with lyme disease. From there he sent me to labcorp for specific blood work to verify his findings. My blood work came back positive for lyme disease. After four weeks of heavy antibiotics I still get flu like symptoms, extreme fatigue, body aches and pains, increased thirst, feeling hot without a high temperature, muscle and joint pain.

          7. Shayle Hirschman Avatar
            Shayle Hirschman

            You should go to Envita or a Lyme Clinic. I know that Mayo and UCLA profile, capture and milk Lyme and Fibromyalgia patients and refuse to help us.

          8. Tanna Avatar
            Tanna

            May I ask what you mean by “capture and milk lyme”?

          9. Diana Avatar
            Diana

            I think they are talking about, milking the insurance company. When they capture someone with Lymes disease.

          10. Jennifer Yanklowitz Avatar
            Jennifer Yanklowitz

            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.

          11. Michelle Ditzler Avatar
            Michelle Ditzler

            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.

          12. I have advised my patients not to overlook antibiotic treatment for a tick borne infection.

          13. Tamara Moore Avatar
            Tamara Moore

            This exact same thing happened to me! Right after the Vax I was forced to get I started feeling bad gradually and one night ended up in the ER. It took 6 months and many tests and medications later I finally found out I had chronic lyme disease that had been dormant in my system for who knows how long. It’s been the hardest 2 years of my life and some days it’s debilitating. I just want to figure out what to do to feel normal again.. currently having a flare and I just need some suggestions on how to get over this Hump so I can regain my life…

          14. I had patients who thought their symptoms were related to the vaccine who didn’t get better until they were treated for Lyme disease.

          15. Vitamin C Vitamin B complex. Glutathione Everything iv

          16. Mike Avatar
            Mike

            I feel for you Jane. I had the same thing happen to me a few days ago. Luckily for me, I’m retired. But I found that listening to your body will get you a long ways. The day that I had my flare up I began to have a craving for fish. So I took some out of my freezer and had it the next day for dinner. That was all that I ate, four pieces of fish. Within the hour after eating I began to feel better. The muscle and joint aches and pains began to subside. By the next day I felt like a new man. I went outside and got a lot of yard work done. So it must have been something in the fish that my body needed. So my advice is to listen to your body. Good luck and I hope that you get to feeling better.

          17. Jill Avatar
            Jill

            The fish got me. I have had episodes for 20 + years. Was diagnosed last year with Heritage Hemochromatosis. Have felt so much better since I cut out beef and sugar for the most part. . Ate a hamburger , chili and seversl pieces of cake several weeks ago. Had my first spell in over a year. I have told my husband that salmon makes me feel soooo good. I eat canned salmon sometime and feel better shortly. Bananas and poatatoes do the same. I am actually waiting on test results at the moment for Lyme disease. The sun actually help’s also. But they keep saying I have a UTI. I did get better last year after 5 rounds of antibiotics for UTI. I can’t explain to anyone how bad I feel when it comes on.

          18. All the best. An underlying illness can make it more difficult to diagnose Lyme disease.

          19. Michelle Ditzler Avatar
            Michelle Ditzler

            The uti can be from the spirochetes in your bladder.

          20. I have not seen a UIT infection from spirochetes I have seen dysuria including interstitial cystitis.

          21. Aeron Avatar
            Aeron

            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.

          22. 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/

          23. 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.

          24. Margaret Avatar
            Margaret

            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.

          25. I advise any patients with long covid or a flareup after a covid vaccine to rule out Lyme

        2. Leigh Avatar
          Leigh

          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!

          1. I’m anti vax too. I’ve heard cats claw works and other parasite and whole body cleanses. I recently had a c section and I got very sick with bacterial infection too. Right eye has lost vision abs left ear is having trouble.

          2. Wendi Avatar
            Wendi

            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!

          3. Alice Avatar
            Alice

            Have you been tested for lupus?

          4. Tanna Avatar
            Tanna

            I would try to see a doctor that specializes in autoimmune diseases.

          5. 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!

          6. Nancy Avatar
            Nancy

            May I ask what tests the ER did to determine Late Stage Lyme Disease?

          7. Ronda Avatar
            Ronda

            I went to my skin doctor, they ordered blood test and found I had Lyme when my own doctor of many years misd it twice, crazy, I don’t go there any more.

        3. Jessica Avatar
          Jessica

          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.

          1. Lenny Avatar
            Lenny

            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.

        4. Ronda Avatar
          Ronda

          Hello I was diagnosed with Lyme disease a year ago this past June and yes I do believe that the migraines and the optic vision problems are caused from Lyme disease I get them periodically from time to time now and it takes about 20 minutes for my vision to come back I also get somewhat dizzy and it makes me somewhat sick just thought this information might help but I’m not sure there’s anything you can really do about it I do take Excedrin Migraine and that does seem to help

        5. Laura Avatar
          Laura

          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

          1. I advise my patients to consult specialists and primary doctors to rule out other conditions with similar presentations.

        6. Pawlak Kris Avatar
          Pawlak Kris

          I have huge migrans and everytime my head stars to hurt left eye hurts as well and have completly blury vison on left eye

        7. mimi Avatar
          mimi

          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

      2. Donna Hearn Avatar
        Donna Hearn

        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.

    2. Ann marie Slattery Avatar
      Ann marie Slattery

      Chronic Lyme or persistent Lyme do research now YouTube I find a wealthy of information and doctors there

    3. Jessica Avatar
      Jessica

      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.

      1. debbie Avatar
        debbie

        you are right no one in the right mind unless u r rich can afford to keep going to a llmd or all natural doctor ugh i’m in so much pain now after 6 years of being in remission smh now my face,jaw, shoulder, neck and spine are killing me smh, I was cdc positive 6 years ago with lots of xo infections and ebv

        1. I am sorry to hear how costly your journal has been. I have patients in practice who do well with a focus on antibiotic therapy without an integrative physician. At least the oral antibiotics are covered by most insurances. I have patients who report benefits from an integrative physician without antibiotics.

      2. Lenny Avatar
        Lenny

        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.

        1. Teresa Avatar
          Teresa

          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!

        2. Cheryl Avatar
          Cheryl

          IME your primary care physician will usually refer you for an X-ray if they suspect spinal damage/degeneration is the cause of persistent pain in your neck, especially if pain or numbness extends through your shoulders or further down the arms. X-ray results that suggest structural cause(s) usually prompt a referral to a pain management Dr who will order the MRI. Physical therapy is always a first line treatment; so some doctors may bypass imaging and refer directly to PT since it is very effective for most people. The pain you describe and the length of time you’ve been enduring it should definitely prompt an X-ray order from your PC which will get the ball rolling. When spinal nerves are compressed and inflamed it can really destroy ones quality of life. I hope you get answers and some effective help!

      3. Michelle Ditzler Avatar
        Michelle Ditzler

        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♡

      4. Opheilia Avatar
        Opheilia

        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

  2. silvana Avatar
    silvana

    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.

  3. 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….

    1. I encourage my patients to try any find joy despite the illness.

      1. Sarah Schulze Avatar
        Sarah Schulze

        And Acupuncture!!!! Helps. Have to make sure you have one that understands and is qualified to treat you with Lyme disease

    2. Lisa Michelle White Avatar
      Lisa Michelle White

      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

      1. Jenn Jackson Avatar
        Jenn Jackson

        Wow! Thanks for bringing our Lord into this horrible disease. You’re an example of “letting our lights shine.” I appreciate your post more than you could ever know. God bless you.

        1. God bless you Lisa.

      2. Tina Mooney Avatar
        Tina Mooney

        Praise the Lord for your testimony! I know that without Jesus I would not be handling this very well. I have struggled all my life and am 52. I have been diagnosed with seronegative RA and Lymes without 3 positive biomarkers. I have 15 different doctors and finally one of them ordered testing that confirmed Mycoplasma Pneumonia. I ended up in the ER because of severe chest pain and back of head pain which felt like I was going to pass out.
        My story is so long so, I better stop now. Thank you for your encouragement, sister in Christ! Hugs

      3. Herbpeddler Avatar
        Herbpeddler

        Bless you for these words of encouragement! I really needed them today. You are so right!!! With God all things are possible, and by His stripes we are healed! Amen! 🙏 🙏 🙏

      4. Amy Bednarski Avatar
        Amy Bednarski

        Thank you so much for your post Lisa! I am a believer and your words have encouraged me greatly. I have been suffering from chronic Lyme for 11 years. I’m on the rebound now after treatment with an LLMD, and now a neurologist, but there are days when I have flare-ups. I have tinnitus constantly and when I have a flare up the Tinnitus is so high pitched that it causes painful burning in my face and head. I also have restless leg, and joint pain in my hands. I’m so thankful for Jesus is with me to get me through. Thanks again for your encouragement.

      5. Lenny Avatar
        Lenny

        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.

      6. Sylvia rivera Avatar
        Sylvia rivera

        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

      7. Excellent contribution to this post. Thank you

      8. neil sarge Avatar
        neil sarge

        That was the BEST response to Lyme disease that I ever heard!!!!!!!

    3. 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

  4. Melony Vasho Avatar
    Melony Vasho

    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.😢

    1. I’ve had to study a lot about mast cell disorders ( tested positive for Alpha Tryptasemia), to keep flares minimal. In my clients I often see the same. It’s not the bugs so much as my immune system’s reaction to them and to die off that seems to be the culprit. Baby steps re antimicrobials and plenty of natural mast cell stabilizers and anti histamines, controlling oxalate and salicylate intake ( I have sensitivity), reducing ammonia, gentle biofilm work, and plenty of detox binders has helped.

    2. Evelyn S Avatar
      Evelyn S

      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.

      1. Diana Darcy Avatar
        Diana Darcy

        How long have you had Lyme disease?

    3. Melissa Bryant Avatar
      Melissa Bryant

      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!!

    4. Laurie Hilton Avatar
      Laurie Hilton

      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.

      1. debbie Avatar
        debbie

        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

    5. Jessica Rudolph Avatar
      Jessica Rudolph

      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

    6. Hailey Avatar
      Hailey

      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.

      1. 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.

    7. Sara Avatar
      Sara

      Omg I get these feelings and see the parasites and know one believes me

      1. Sara Avatar
        Sara

        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

        1. I am sorry to hear you are sick. I have patients who have been reinfected. Anaplasmosis, Ehrlichia, and Babesia are common co-infections. The tests are not as reliable as I would like. I also have to look for other causes.

  5. 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.

    1. I find it difficult to be sure Lyme disease and co-infections have cleared. I encourage my patients to look for other causes. I have patients who have improved with a change in antibiotics. Call my office at 914 666 4665 if you have questions.

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