The CDC Reveals The Truth About Lyme Disease

November 15, 2022

Lyme disease

Content updated from previous publish date.

Lyme disease is a bacterial infection caused by the bite of an infected black-legged tick, also known as a deer tick. Lyme disease is primarily known for causing a rash and flu-like symptoms, but according to the CDC, it can persist in some people and lead to what is called Post-Treatment Lyme Disease Syndrome (PTLDS).

Lyme disease is associated with numerous co-infections that can mimic or contribute to virtually any medical, neurological, or psychiatric condition, which is why Lyme has been called the “great imitator.” Lyme has been vastly underdiagnosed in the U.S.,  in part to inadequate testing methods, but also because of a general lack of acknowledgment within the medical community that chronic Lyme or PTLDS are real.

Lyme disease is primarily known for causing flu-like symptoms, but according to the CDC, it can persist in some people and lead to what is called Post-Treatment Lyme Disease Syndrome (PTLDS). Click To Tweet

In the medical community, Lyme remains misunderstood at best and dismissed at worse. How can doctors treat an illness if they don’t believe it exists? They can’t, which is why far too many people have been suffering from “Lyme brain” for far too long.

At Amen Clinics, hundreds of patients struggling with resistant complex symptoms have tested positive for Lyme disease and gotten significantly better when it was treated.

COMMON NEUROPSYCHOLOGICAL ISSUES RELATED TO LYME DISEASE

Lyme disease has been associated with a wide variety of persistent neuropsychological and cognitive symptoms, including:

  • Impaired attention, focus, concentration, judgment, and impulse control
  • Impaired memory and speech functions
  • Disorganization and getting lost
  • Poor problem-solving and decision-making abilities
  • Slower mental processing speed
  • Issues similar to those seen in dementia and Alzheimer’s

Approximately 70% of those afflicted with Lyme disease report changes in their thinking such as memory loss and reduced mental sharpness.

LYME DISEASE: MISDIAGNOSIS AND DELAYED TREATMENT

People who are diagnosed with Lyme disease within the first few weeks of being infected are fortunate because the appropriate antibiotics have a much better chance of working when used early. Unfortunately, Lyme disease is often missed and the infection is allowed to take hold, disrupting the immune system and causing a cascade of inflammatory responses.

Even when Lyme is suspected and a blood test is ordered, the common “Western Blot” test often results in false negatives. In addition, traditional medical practice rarely tests for Lyme’s co-infection antibodies, even though they may even be more common than Lyme itself!

It’s not uncommon for someone with Lyme disease to get multiple negative test results before receiving a proper diagnosis. This leaves thousands of undiagnosed patients feeling sick and confused and spending months, years, or even decades wandering around from doctor to doctor trying to find out what is wrong with them. This means that some people with Lyme encounter financial ruin before finding a treatment that works.

When the diagnosis is delayed, Lyme disease is harder to treat. After 3-6 months in the body, Lyme has taken hold of the immune system and becomes difficult to eradicate with antibiotics alone. An animal study published in Plos One in 2012 showed that Lyme disease has tenacious survival skills. Inside the body, the Borrelia burgdorferi bacteria that causes Lyme forms a biofilm, which allows it to constantly rearrange its structure, hide, and resist environmental conditions such as antibiotics.

PREVENTING LYME DISEASE

Avoiding tick bites is the best way to prevent Lyme disease. Follow these tips to reduce your risk:

Know tick habitats. Blacklegged ticks live in moist and humid environments, particularly in or near wooded or grassy areas. You can even encounter ticks in your own backyard! Avoid them by steering clear of tall vegetation and walking in the center of trails.

Perform daily tick checks. Be sure to check yourself, your children, and your pets after being outdoors. Create a top-down checklist, searching the following areas:

  1. In and around all head (and body) hair
  2. In and around the ears
  3. Under the arms
  4. Around the waist
  5. Inside the belly button
  6. Between the legs
  7. Back of the knees
  8. Underneath socks

TIP: Placing clothing in a dryer on high heat will effectively kill ticks.

Know how to remove a tick. Follow these steps:

  1.  If possible, use pointy tweezers
  2. Disinfect the tweezers with rubbing alcohol
  3. Grab the tick close to the skin and use a slow, steady motion to pull the tick out
  4. Disinfect the tweezers again
  5. Keep an eye on the bite area

EARLY DETECTION OF LYME DISEASE

Catching a tick in the act of biting you or remembering a past tick bit is the best way to know whether you are at risk for Lyme disease. However, one study from Canadian researchers showed that up to 84% of those with Lyme-related chronic symptoms fail to recall being bitten! For this reason, it’s important to know the signs and symptoms of early Lyme infection and seek medical treatment right away if you suspect you may have contracted Lyme.

KNOW THE SYMPTOMS OF LYME DISEASE

Lyme Symptoms: Days 1-30

The most common early sign of Lyme disease is a bullseye rash at the site of the tick bite, occurring in an estimated 70-80% of infected people, according to the CDC.  However, the physicians at Amen Clinic believe the number of people experiencing a rash is much lower, affecting only 20-40%. If a rash does appear, it typically happens within 3-7 days and then gradually expands over a period of several days, reaching up to 12 inches across. The rash usually feels warm to the touch, yet it is rarely itchy or painful. Note that ticks spread at least 10 other co-infections that may cause rashes.

Other early symptoms may include:

  • Flu-like illness (unexplained fever, chills, or body aches)
  • Extreme fatigue
  • Headaches
  • Insomnia
  • Mood swings

Lyme Symptoms: Days 30 and Beyond

Weeks to months after being infected with Lyme disease, symptoms may include:

  • Insomnia
  • Joint inflammation and pain
  • Bell’s palsy
  • Impaired memory
  • Brain fog and difficulty thinking
  • Irritability and explosive rages
  • Panic attacks

Late-Stage Persistent Lyme Symptoms

Months to years after being infected, symptoms may include:

  • Progressive dementias
  • Seizure disorders
  • Strokes
  • Asthma
  • Heart problems
  • A variety of movement disorders such as Parkinson’s and multiple sclerosis-like syndromes
  • Visual disturbances or loss of vision

CONSIDER LYME DISEASE IN CHILDREN

In addition to tick bite infection, Lyme disease can also be passed from mother to baby. The symptoms to look for in children include:

  • Changes in behavior
  • Fatigue
  • School and learning problems
  • Headaches
  • Gastrointestinal complaints
  • Migrating pains
  • Hypersensitivity to noise, light, odors, and touch

If you’re struggling with treatment-resistant psychiatric or cognitive issues, it’s important to investigate infections, such as Lyme disease, as a possible root cause. Getting a proper diagnosis can be the first step in the healing process.

Lyme disease and the psychiatric and cognitive issues related to it can’t wait. At Amen Clinics, we’re here for you. We offer in-clinic brain scanning and appointments, as well as mental telehealth, clinical evaluations, and therapy for adults, teens, children, and couples. Find out more by speaking to a specialist today at 888-288-9834 or visit our contact page here.

95 Comments »

  1. My husband was diagnosed with Parkinson’s disease nearly 7 years ago, when he was 49. He had a stooped posture, tremors, right arm does not move and also has a pulsating feeling in his body. He was placed on Sinemet for 8 months and then Sifrol was introduced which replaced the Sinemet. During this time span he was also diagnosed with dementia. He started having hallucinations, and lost touch with reality.I searched for alternative treatments and and started him on Parkinson’s herbal formula i ordered from Health Herbal Clinic, Just 7 weeks into the Herbal formula treatment he had great improvements with his slurred speech, there is no case of Rigid muscles and Slowed movement (bradykinesia) since treatment, visit Health Herbal Clinic official website www. healthherbalclinic. net or email info@ healthherbalclinic. net. This treatment is incredible!

    Comment by Michelle Tafur — October 4, 2017 @ 6:13 PM

  2. I never heard of any of that for possible modes of transmission.

    Comment by Diana Drummond — October 4, 2017 @ 7:44 PM

  3. I was diagnosed with Lyme in July 2015. Only received two weeks of treatment also. Felt better at first but have memory impairment,insomnia, strange pains in my legs that shift and feel like it goes to the bone. Especially if i try to rub/massage the sudden onset pain. Wakes me up in the middle of the night. Knee locks up amd had bad pain in it for weeks after ibfinisged the medication. I am edgy,CONSTANTLY tired but can’t hardly ever sleep,irritable,edgy,strange hip pain,joints,muscles ache,bad neck pain, numbness from my shoulders down into my finger tips,feet burn,unable to concentrate,short fuse,impatiemt,restless,joints ache and sometimes some lock up. Ibfeel

    Comment by Diana Drummond — October 4, 2017 @ 8:00 PM

  4. Dr. Sponaugle in Florida has gotten many young female Lyme Patients out of their wheelchairs, several of them during my time there. He saved my life as well, and I can’t speak highly enough of him and the entire staff then. Go to his website to see the testimonies of the wheelchair patients and there is a lot of great reading material there as well!

    Comment by Veran — October 6, 2017 @ 10:16 PM

  5. My husband was diagnosed with Parkinson’s disease nearly 7 years ago, when he was 49. He had a stooped posture, tremors, right arm does not move and also has a pulsating feeling in his body. He was placed on Sinemet for 8 months and then Sifrol was introduced which replaced the Sinemet. During this time span he was also diagnosed with dementia. He started having hallucinations, and lost touch with reality.I searched for alternative treatments and and started him on Parkinson’s herbal formula i ordered from Health Herbal Clinic, Just 7 weeks into the Herbal formula treatment he had great improvements with his slurred speech, there is no case of Rigid muscles and Slowed movement (bradykinesia) since treatment, visit Health Herbal Clinic official website This treatment is incredible!

    Comment by Michelle Tafur — October 8, 2017 @ 5:35 PM

  6. Thank you, I sent this link to my daughter who will be starting her first college semester in January. She missed much of her school since 7th grade through 10th because of Lyme. Thank you again!

    Comment by Elizabeth Bisconer Earnest — November 9, 2017 @ 8:51 PM

  7. Borrelia is not a regular bacteria.

    BRAIN FOG seem to be the systems way to say this is not so serious. Its Dilerium which is serious.

    AND THE TESTS are FALSIFIED DONE

    Comment by vidar1971 — November 11, 2017 @ 3:05 AM

  8. I have dealt with this issue too. It started 3 years ago when my immune system and allergies took a steep deep due to stress and inflammations. I would say I rarely get it anymore. A friend of mine recommended the use of PeaPlex. I ordered it from
    RS4supplements.com and it helped me a lot.

    Comment by Lucas — November 19, 2017 @ 11:43 PM

  9. My wife was diagnosed of Parkinsons Disease at age 59. She had severe calf pain, muscle pain, tremors, slurred speech, frequent falls, loss of balance, difficulty in getting up from sitting position. She was put on Senemet for 6 months and then Siferol was introduced and replaced the Senemet. During this time span she was also diagnosed with dementia. She started having hallucinations, lost touch with reality.

    This year, our family doctor started her on NewLife Clinic Parkinsons Disease Herbal mixture, 1 month into treatment she improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of dementia, hallucination, weakness, muscle pain or tremors.

    Visit NewLife Clinic website ww w.newlifeherbalclinic .com. She is strong again and able to go about daily activities.

    David Craven

    Comment by David Craven — December 7, 2017 @ 6:28 PM

  10. I am a 59-year-old woman. My Parkinson’s disease appeared at the age of 57. My symptoms, at the beginning, were fine tremors and rigidity with joint stiffness. My neurologist prescribed entacapone with levodopa, carbidopa, and pramipexole. I opted not to go on prescription medicines but decided on using herbs instead, October 18, 2017 after being on the herbs you recommended, i had a total recovery from Parkinson’s disease with this natural herbal formula treatment. The tremors, Shaking, Joint Stiffness has subsided. When I stumbled upon you guys, it was just pure instinct. And from that day on it has been one of the best decisions I’ve made in my life. The caring that goes into explaining what herbs work for whatever ails me is astounding. In today’s world where so many are after a quick buck, selling without care, Natural Herbal Garden’s staffs amplifies the difference. I’m a believer in karma, and for generations to come, this is a herbal store that will be leaving it’s footprint in this world.

    Comment by Francess Raphel — April 27, 2018 @ 5:56 PM

  11. Thank you so much for sharing this information.

    Comment by carrie Hebel — May 9, 2018 @ 2:44 AM

  12. Hi,
    The most important part is the correct blood test to determine if it is Lyme. Please put this in furture articles. Plesase help your audience. You have given lots of info, but missing the LINK to know for sure.

    Thank you,
    Angelica

    Comment by Angelica Wright — May 9, 2018 @ 5:18 AM

  13. Whoops. So sorry. I just read the previous post. THANK YOU, THANK YOU, for giving the name of the company to get you blood analyzed.
    You are the best.

    Comment by Angelica Wright — May 9, 2018 @ 5:21 AM

  14. What is the name of the. company, the blood test & all pertinent info. Please send it to my email address. Thank you

    Comment by Irene mason — May 10, 2018 @ 2:28 AM

  15. I have been dx with Lyme and HHSV or chronic lyme, babesia, mycroplasmic pneumonia as well. I have had right side tremors, severe pain behind left eye, seizures esp before my cycle, loss of speech, unable to speech. I am in unbearable pain, Although this is a small amount of what goes on it is really hard to deal with all the neurological issues. IF anyone has Lyme related neuro issues and how they healed it. I wonder if it is the biofilms.

    Comment by tara — June 6, 2018 @ 7:27 PM

  16. I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, so this year our family doctor started me on Natural Herbal Gardens Lyme disease Herbal mixture, We ordered their Lyme disease herbal treatment after reading alot of positive reviews, i am happy to report with the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using herbs, my symptoms totally declined over a 8 weeks use of the Natural Herbal Gardens Lyme disease herbal mixture. My Lyme disease is totally reversed! Their official web page is www . naturalherbalgardens . com this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier

    Comment by Janet Chambers — July 9, 2018 @ 7:06 PM

  17. Could you please tell me the name of the company that does an accurate blood test for Lyme disease How do I get in touch with them Thank you

    Comment by Sara Opeka — August 3, 2018 @ 5:07 AM

  18. I need help for my daughter doctor dosnt believe. Her she has lyme disease that as been left due to doctors and hospitals not doing anything. Its just ruined her life. And her daughters. Just need to know where to go. If you have any advice.

    Comment by Carol — September 3, 2018 @ 12:28 AM

  19. Hello Carol, we will have a Care Coordinator reach out to you. Thank you for contacting us. You can reach us directly at 888-288-9834 or by submitting this form – https://amenclinics.com/schedule-visit/. We do have Lyme-literate physicians that specialize in integrative and functional medicine.

    Comment by Amen Clinics — September 4, 2018 @ 11:27 AM

  20. We have a 30 year old daughter who was born with a rare syndrome called Mobeius Syndrome. It affects the cranial nerves. She has it at one of the most sever levels. She has both physical & developmental delays. She acts & feels like a child & although she has made more progress than we were told to ever expect, she still will never be independent. She is tiny- about 5 feet tall & weighs about 75 pounds. In November of 2016 she began having symptoms( very sudden onset) of severe photophobia, numbness & tingling in hands, feet & cheeks. She has pain that ranges from mild to unbearable in the joints of her lower extremities & in the soft tissues around the joints. She was hospitalized 3 times in quick succession in the first 2-1/2 months when these symptoms. Unfortunately, the largest& best hospital in our area- considered one of the better hospitals in the state & in the country & also a regional trauma center has made many changes in the past few years. Primary docs can no longer have patients admitted & no longer see or treat their patients in the hospital. You must go to the ED & hope you will be admitted. If you are admitted, you will be treated by “ hospitalists”- they are employed by the hospitals. There is a complete disconnect from the primary doc- the one who knows the patient & their history the best. We stay with her around the clock to advocate for her. She was eventually discharged & sent home on large doses of opiates with no diagnosis. About 5 months after the symptoms began we received a call out of the blue from her primary who had been reviewing her hospital records. She told us that our daughter had a test for Lyme while in the hospital & that it was positive. Despite our repeated efforts to be kept informed of everything & the fact that we were always there with her, we had no idea this test was done. Her primary put her on a 6 week course of antibiotics- doxycycline & amoxicillin. Less than a week after starting this treatment all of her symptoms were gone. She stayed well for a little over 3 months & aside from needing PT to regain what she lost from being on bed rest, she resumed her usual busy active schedule & was enjoying life. Then all of the symptoms came back. Again, she was repeatedly hospitalized- still no diagnosis. We kept asking about Lyme, but NONE of the docs wanted to hear about it. Some of the remarks doctors made to us. were* “” I don’t even want to be in the same room with the word Lyme mentioned” * “ My colleagues would think I was an idiot if I went down that road” * “ Lyme is too political for me” , * “ There is no such thing as chronic Lyme or post treatment Lyme”,& lots more like that. Didn’t the CDC send out info about this several times to all members of the AMA? Now, over a year & a half later, she is still suffering, still in large doses of opiates that don’t usually work very well. While in the hospital she has been on cardiac monitors which show she is having cardiac pauses & episodes of bradycardia. She has been hospitalized many times over her 30 years & has frequently been on a cardiac monitor/ telemetry & has never had this problem. At our insistence she saw a local doc who is supposedly Lyme literate. She did a lot of labs & said they all were negative, meaning she doesn’t have active Lyme & no lab evidence she ever had it. She did not tell us that the tests were frequently incorrect. She didn’t tell us that there are often confections with Lyme. She saw our daughter again recently & is going to another lab work up, finally admitting that the testing is not always reliable. We asked about testing at Igenex labs which we heard were more reliable. She said they were often more reliable, but most insurances will not cover the tests. She said she would refuse to treat her unless the labs showed something, but at this late stage there were not many treatment options available. We are beyond upset & frustrated by all this. We love her so much & she has been raised with a lot of love & very gentle nurturing. She is now having all the original symptoms & is now having dizziness when sitting or standing & for a while constantly. I have been a nurse for a long time & have not seen many patients suffer as much as she has/is. The hospital no longer wants to admit her- they said they aren’t responsible for diagnosing her or treating an ongoing long term illness. When we say we can’t do much to help her & we are exhausted & stressed they hint about putting her in a nursing home. After she was born & had so many problems, I was unable to return to work for many years. When I did, I had to work short shifts in long term facilities & I was appalled by what conditions were like even at the better facilities. She is losing her fighting spirit- she has always been strong & determined to live the best life she could. Now she is talking about going to the place where there is no more pain & suffering- the h word. She seemed afraid to tell us, but finally said “ heaven”- at least I won’t have to suffer anymore. We are devestatex by this. I cry all the time & Im depressed & exhausted, as is my husband. We are older & had hoped to set up a comfortable happy life for her when we are gone. Now, we are going through all our savings like crazy & we are afraid. We have zero support system- we did have a lot more when we were younger, but grandparent have passed on & there is no one else. Despite the fact that 2 incomes are really needed these days, we managed very well for a long time as we had been married for many years before having children & have saved a lot of money. That is running out now. Does anyone have any ideas or help? I forgot to mention that she is now also having periods of mental confusion & fogginess- something she has NEVER had. It all sounds like post treatment Lyme to me. We are so angry at the hospital for not telling us they did the Lyme test & that it was positive. We are aware that delayed treatment makes it more likely to have the post treatment chronic Lyme. Any help??? Please!!!

    Comment by Jo Regan — September 8, 2018 @ 9:27 AM

  21. My husband was tested positive about 6 years ago. From the time I remember him being bit by a tick and the strange rash on his arm, it took two years to convince a doctor to test him for the Lyme bacteria. Even had to pay out of our own pocket because the doctor wasn’t ordering it himself. The very next morning they were calling us to come pick up a prescription for doxycycline. He took the medication as prescribed, but his symptoms have persisted still to this day. And because our doctor does not believe in chronic lyme disease my husband has had to suffer slowly losing his memory terrible irritability and major joint pain. He is scared he won’t be able to make it another five years to provide for the family. He just turned 34 this year. The more education we can give people the better. Who need people to stand up to the doctors that keep doubting us and listen. No one should have to go through what my husband has gone through and I pray for all those on here who have had to suffer.

    Comment by Misty L Gale — October 2, 2018 @ 6:46 PM

  22. I would be grateful for this information!

    Comment by Cheryl Ruffner — October 12, 2018 @ 7:22 AM

  23. Misty your husband doesn’t have to suffer so much with Lyme you can get better. There are many options out there feel free to write me at rikky1 @ yahoo . com if you want to chat. I’m not a salesman or anything of the sort I just try to help people since I’ve been suffering from this nasty disease for the past 4 years but am better than when I started.

    Comment by Richard — October 13, 2018 @ 5:49 PM

  24. Hello ,what symptoms did you have before starting treatment ??

    Comment by ana — October 20, 2018 @ 2:08 PM

  25. Hello, i don’t have any advice to give you and I wish I had but I was touched by your story and my thoughts and prayers go out to your family.

    Comment by Ashley — November 6, 2018 @ 8:37 AM

  26. Not sure when I became infected,I think in August is when I took the tick out of the back of my leg. In October started having symptoms of lyme disease, had the bullseye on leg were it had been attached. Went to my family dr. He sent me for blood test it came back a couple days later it was negative.He started me on doxycycline but after the test came back negative he said I didn’t have it. I still continued to take the antibiotics he had prescribed. Started having pains,couldn’t sleep,very irritable. Went back to dr. Told him what was going on he diagnosed me with some bullcrap,I cant remember what he said. Went to hospital they have ran cat scan EKG and took enough blood to supply have my town.Also a piece of the tick had come out and I put it in a baggy to show them..still have the hole in my leg which is starting to heal,the hospital told me I had mono. I’m dizzy alot started having numbness in arm and hand and leg. Started seeing things speech problems and brain seems foggy. I have been shakey alot and just start crying for no reason. I go back tomorrow for the blood test results from hospital.. hopefully something can be figured out,I feel like I’m going crazy and my family is all suffering from my lack of motivation and my moodiness. This has to be about one of the worse things I have went through.I find it sad that doctors and hospitals are not educated enough on lyme disease to know when someone has it.

    Comment by Lori — November 6, 2018 @ 5:57 PM

  27. Ive had lyme sincie i was 10, im 36 now & have “Chronic Lyme” which somehow doesnt exist?!? I has 3 separate Lyme tests @ 3 completely different hospitals/facilities. My mother who also works in the a hopital field like you for 32yrs now and has been going carzy helping me any way she can no wthat my husband divorced me because he doesnt want to care for asick person anymore after 10yrs of marriage and tokk everything and now live back with her & my father. After the 3 negative tests, she found Igenix online. At the time the blood test kit was not only free, it was also shipped free. But ut the test cost $500, it was the best $500 i ever spent after waisting hundreds of thousand of $’s over 4yrs, belive me i wasnt worried that insurance wouldnt pay after i got my reults back. It showed that i had 3 different strains of Lyme Disease and it told me which strains i tested positive for. They keep up to date on every new strain that there possibly is and they are very thorough and precise with their testing along with all the paperwork they give you. With that paperwork all of a sudden it was like i was given this magical key to be treated (even thoughinsurance still wont cover anything with “Lyme attached to it, all of my Dr.s were onboard to write teasting, treatments and RXs in a wat that doesnt say “Lyme” so that the insurance will pay most but not all and that was better than nothing, so now i could start trying more and still be able to pay for it). I just asked my mother the exact amout so i could tell you, i thought its was $500 but she told me its less now but i dont know how much less. Both my father and sister-in-law were diagnosed with several different things and were suffering too & i noticed & read alot anout Lyme. Its constantly misdiagnosed as other things or it actually causes MS, RA, Alzheimers, Dimentia etc…, so we all chipped in and paid for testes for my father and my sister-in-law. Both of them came up positive for several strains also and now are getting the correct treatments, Doctors, meds and the Dr.s are writing for meds, treatments and differnt codeing for the insurance to be able to pay. If at all possible, please, since she has already come up with 1 positive test, get a tested by Igenix? It will make so many more things possible, im not saying it will be easy, you just have to know when to say she has Lyme and when to just tell them what issue/illness/diagnisis she has for when going to hospitals, i know this because i have had more than my fair share of hopital stays since i was BORN!!! I was a sick kid even before i got Lyme, im not as sick as you child but i suffer too & being diagnosed 26yrs after contracting it ots been very much a loosing battle and you will most likely go through many Dr.s before you find the right ones who will completely understand and even lay their practice on the line to treat your child (even though i know she is 30, shi is still you child & i respect that and understand as i am someone elses child who is also very sick with Lyme and a couple other severe heath issues). I really hope this helps you & you can have that proof you so badlt need to help her get the ball rolling towards a slow & frustrating battle going more smoothly that it ever was & brings some sort of hope. Good luck and i pray she gets all the help she needs & definately deserves!!! Dani 😉
    PS. I didnt know how much that paper with my results from Igenix would really impact my treatments, medications & access to specific Dr.s it would have but it ended up really opening that vaulted door and secrecies my Dr.s & i would have to do but alway get done that would only go with go with having Lyme Disease let alone Chronic Lyme Disease. Tell her from 1 sick girl to another to be strong but still never hide how you are feeling wether it be you r body or your mind, those who are foghting with you taking you to your Dr.s need to know everything & write it down for when you ar eu able to bcuz when youre having 1 of those days of Hurxing with pain, confusion, lethargy, the famed “fog”, ect.. they will be your voice but with your words. So even though you dont want them to hirt by you telling them what hurts, where, how, how much, how long, what you hear, ticks you get, the colors you see. Explain the best you can in every way to your mom & dad bcuz they are going to be tou best hope to help relay what is going on when you really cant and it will happen more often than not. Make sure to keep at least 3 business cards from each Dr you see amd a file folder with copies of every test done on a disc, when you go to that next Dr ALWAYS ask for them to male their own copy and MAKE SURE YOU GET YOUR ORIGINAL BACK, keep all record of every test and write down every medication with the dose when it what changed, by how much it was change, when you stopped taking it, how they helped, didnt help, hurt and its side effects. Its very helpful to have 2 16-20 (or more sections than 20mof you can find it) file accordain folder, 1 for the The Dr.s you see amd the other for the tests, treatments, copies of results & discs, multiple copies of current med lists for more Dr.s will make the 1st visit faste &easier, the same with everything your being diagnosed with, you past meds w/ their reason for use, mg & how many/day or if they are prn, when they went up and down along w/ their effectiveness or lack there of & how it made you feel in the best explainable detail, a deataild list of everything each specific Dr did for you including specific tests. This may seem like alot but i assure you this look me a long time to get this right and when the Dr.s have all of this they will be able to try and treat you in the most accurate and best way they now how/possible with out missing anything. And always remember not 1 Dr out there has all the info, so when that Dr runs out of ideas make sure to ask your Dr for a referral to go to the next step before you are sitting and waiting too long before you star something else that can help you but always remember NEVER JAVE MORE THAN 1 DR TREAT YOU WITH OUT HAVING EACH DR. KNOW WHAT THE OTHER IS DOING!!! Dont double upon Dr.s woth put them both/all knowing what the other is doing or giving no matter how desperate you are, i was seriously hurt because i didnt do what i just warned you not to do and it caused me to be increadbly sick & in more pain than ive ever been. If you (MOM) have any question, please dont hesitate to ask me be email (danigt50@yahoo.com) and between my motjer and i we have done years of reading research, forums, laws, new testing, what WILL make your Lyme worse (like everyday thing you would never think about, like haveing metal fillings ot extremely bad for Lyme patients & food or meds that you should never take when u have Lyme ect)we will do our best to pass on everything we’ve learned, where to go, how to find new Dr.s, what to recomend to your Dr.s for treatments that they havent heard of (most Lyme Dr.s are very open to things they havent heard of and most are very passionate about there job and are very open to many things so never be afraid to mention somthing youve read about, they will look into it if you mention it! We will also give you referals of Dr.s that can help give your local Lyme Dr. treatments they havent used. 1 other thing, try going to a “Lyme forum group” like a support group that has alot of regulars in it, they are an awsome source of info and are eager to pass on what they know, what your going thru and can give you valuable and helpful tips, meds, foods, treatments, Dr.s ect…
    So sorry about the long messageand please dont be offended of i have told you alot of what you already know or a lot of what you already are doing. You had mentioned you are a Nurse but i dont want to ever assume anything so i just try to tell everything that has been the best help for me, my family, parents of Lyme Patients and others with Lyme Disease. Im not cured but ive been thru so mich more than most and if i can help you or have helped you just a little bit in any way then i know i have done my part as a human being, we all need help in many ways and i hope something ive written to you has helped you even if you decide not to respond or email me, i wish you and your daughter the very best of luck & more better days than worse of course 🙂

    Comment by Danielle Smith — November 8, 2018 @ 3:48 AM

  28. Igenex does accurate testing

    Comment by Suz — November 27, 2018 @ 1:40 PM

  29. Go to Marty Ross MD he has weekly QandA and lots of good info for healing
    How long on abx ?
    You might want to try Otoba Bark and cats claw
    Suppose to be as good as most abx

    Comment by Tara — November 30, 2018 @ 5:09 PM

  30. I would love to talk to you . Everything you described I’m going through , since 2015 when I got sick. People think your crazy cuz one min ithe pain can be in your head n next minute the pain can be in your foot . It’s so hard to describe everything that goin on or what we feel sometimes and you did a great job doing so . I would very much like to talk to you . martann48@gmail.com .

    Comment by Marti Tann — December 10, 2018 @ 3:35 PM

  31. Hello Marti Tann, I would love to talk to you. It’s not crazy.. I’ve have Lyme Disease I have all kinds of different symptoms at different times. Rash to pain for years in my feet, arms, hands my skins burns sometimes I can’t walk on my feet I’ve gotten bed ridden a few times. I pretty much wish I was dead at times. I’ve been on antibiotics for years then off. I look great on the outside but pain riddles my body everyday I can’t sleep either. I was very athletic in my day still wish I was but this disease has kicked my ass pardon my French. The doctors don’t know what to do with me either. It’s sad I totally understand you. It takes all your energy too. So sorry for you..people treat me the same. Thanks, wish I could help us both

    Comment by Ronna Casey — December 18, 2018 @ 7:39 PM

  32. Hello. I am ltonser. And i need to help. hmmm

    Comment by ltonaloms — December 22, 2018 @ 1:04 AM

  33. I was diagnosed 13 years ago with Lyme,only because I insisted I be tested.my dr tested me for everything but Lyme . It was like he didn’t want anything to do with the terrible disease.After 30 days of doxycycline I was better,for awhile but when symptoms returned and I returned,he yelled at me and told me I was cured. I can’t find any help for my terrible pain and fatigue etc. I’m desperate.sometimes I would rather die.Can anyone help

    Comment by Walter Box — January 6, 2019 @ 7:17 PM

  34. I am so sorry that you are dealing with this. I was in your exact position several years ago and I too wanted to die. I have been treated with several courses of doxycycline, a few courses of flagyl, and the cowden protocol. The two-tiered test is not an effective test anyway and misses many positive cases of lyme. What you need is a PCR test done by a reputable lab (Igenex labs) for lyme disease. Then seek a doctor that will prescribe you antibiotics. If you are unable to get your hands on some antibiotics, then cowden (an herbal protocol) alone is slower, but still powerful and effective. Also, buy yourself a cheap tent sauna off Amazon as the bacteria die in heat. The die off reaction will make your symptoms worse initially, but will gradually make you better. One of the most common causes of death in LD patients is suicide. HANG IN THERE. IT DOES GET BETTER. I used to have such terrible memory that I would walk into my local starbucks and forget the name of my favorite coffee that I ordered daily. Now I am studying biochemistry and physics in attempt to go to medical school and help others suffering from Lyme disease. Also, try to cut out everything unhealthy from your life. Don’t eat sugar or drink alcohol and make sure you aim to get as much sleep as you possibly can. Feel free to email me sdennison@mail.usf.edu and join social media lyme disease groups for social support and information. LYME WILL NOT CONTROL YOU FOREVER. Warm regards, Sarah

    Comment by Sarah Dennison — January 11, 2019 @ 10:58 AM

  35. I was diagnosed with Parkinson’s disease 3 years ago at the age of 59. For several months I had noticed tremors in my right hand and the shaking of my right foot when I was sitting. My normally beautiful cursive writing was now small cramped printing. And I tended to lose my balance. Neurologist had me walk down the hall and said I didn’t swing my right arm. I had never noticed! I was in denial for a while as there is no history in my family of parents and five older siblings, but now accept I have classic symptoms. I am taking totalcureherbsfoundation com herbal treatment  and am about to start physical therapy to strengthen muscles.this herbal treatment has full get rid of my PD after 15 weeks of usage and it has reversed all symptoms.

    Comment by Reece Mia — January 16, 2019 @ 9:59 PM

  36. I have had many symptoms of Lyme disease and other health issues for years. Contant tiredness, Joint pain, foggy brain, muscle pain, etc. I just chalked it up to aging. I am 61. Until today I didn’t really know why. I used to be a nursing assistant working in a step down unit. Ten years ago I was directly exposed to a MRSA infection from a patient I bathed. He had a history of MRSA but the ER nurse didnt do a though rough intake and so he went on special precautions like he should of been. My health really started going downhill from there. I was treated for three months before the MRSA went away on my skin. I was given several different antibiotics including Doxycycline and Flagle. I had a severe allergic reaction to flagle with a headache so bad I thought I would die. All those antibiotics destroyed my gut and gave me divertuculitis. I am on constant probiotics to repair gut function and if I miss a day or two of probiotics I get sick. The only thing that finally got rid of the MRSA was ionic silver gel and manuka honey.
    Last year I had a mold exposure from our HVAC and broke out with hives all over my body. After the urgent care doc didn’t help, I went to a Naturapath that was recommended to me by a co worker. He had reversed her clinically documented MS!
    He used a bio scan SRT which gave me an 8 page report that unbelievably showed every single ailment that I have ever had in my life. He cured my hives with a detox protocol and four Rife machine treatments. I had a severe candida overgrowth that was causing the hives. The rife also removed the Epstein Barr Virus from my body.
    I have not had one illness in the last year and have been feeling better until recently, I forgotfully missed a few days of my probiotics, and broke out again with a MRSA infection in the same spot it was ten years earlier. Reluctant to take any more antibiotics that destroyed my gut the last time I made an appointment with my naturapath. He did another Bio scan and I scanned positive for several autoimmune diseases. He then scanned deeper into the bacterial causes for those auto immune diseases and I scanned positive for several different types of Lyme bacteria. I recalled two incidences involving ticks, one in myself in Junior High around 48 years ago, I didnt have a bullseye rash that I remember! Abother incident was when living in Germany with the military in 1990 my 4 kids came back from a hike in the woods and were covered in ticks! As a mom I had to remove them all and treat all their clothes. I don’t remember getting bit myself. Later also had a dog in FL that got ticks that I removed.
    My questions are; how long has Lyme disease been around and can you get it from any other insect bites?

    Comment by Cheryl — January 17, 2019 @ 10:33 PM

  37. Dear Jo,
    I’m so sorry to hear about your daughters illness and struggles with Lyme and the co-infections. I too have late stage Lyme. My husband got not by a tick that had Lyme (had tick tested). The walk in clinic gave my husband a couple days of antibiotic. One week later he got horrible knee pain and could barely walk. My husbands Lyme test was negative but luckily I had the tick tested by the DEP and found it was positive. I had to fight with my husbands doctor for the antibiotic. The antibiotic cleared the knee pain within a week but my husband’s health is declining. My son was bit by a tick when he was 5. Same scenario. My son didn’t get the rash but the tick had Lyme. Doctor gave my son one week antibiotic and after that week, my son spiked a fever, laid on the floor of the car and was screaming. We brought him to the ER and the ER said one week antibiotic was not enough and they put him on two more weeks of amoxicillin and he seemed to get better.. This was 20 years ago. My son began having problems at school with concentration, he started getting twitches and complained of pains. The school suggested I have my son evaluated by a medical center for learning disabilities. It’s a very long and grueling story but after 4 children’s hospital and several psychiatrists, not one ever mentioned Lymes. My son was diagnosed psychiatrically not physically. Tourette’s syndrome, ADHD, ODD etc….the school would blame my sons actions or lack of from his home yet I would blame the school. My son would go to the nurse every day with physical symptoms. It’s horrible when I look back because I didn’t know what Lyme and it’s co-infections could do to a person. My son was misdiagnosed all these years. I just had a talk with my son the other day and apologized to him and told him I did the best I could but I didn’t know it was from lymes. The only advice I could give him is “stay away from sugar because Lyme loves sugar and dairy”. If my son choses to get treatment, he would have to see a Lyme literate doctor but it appears that sometimes the antibiotics don’t work in some patients. The other thing I found NOT to do when you have Lyme and that is DO NOT GET YHE FLU SHOT! I did and it almost killed me. I’ve been suffering for 3 months with a Guillane Barre syndrome from the flu shot. Peripheral neuropathy ……
    I’m going to an ILADS Lyme literate doctor on Tuesday. If that office doesn’t help then I will try another Lyme literate doctor. I try to read up on Lyme when my eyes don’t burn horribly and when I can think. I can’t move around and only leave the house for doctors appointments. I have a spinal tap this Friday because the medical doctors, foot doctors and neurologist are perplexed and my Lyme tests are negative so they don’t believe it’s lyme. I’ve also had 3 ER visits in 3 months ranging from peripheral neuropathy, numbness and paralyzing body pain to bladder dysfunction and unquenchable thirst, to stiff neck and migraines. It’s constantly changing. The emergency rooms won’t treat me either. After I see the Lyme doctor and have the spinal tap, I’m going to try the herbal approach. I got the books from STEPHEN BUHNER on Lyme and co-infections. It’s all about keeping the immune system in check. Lyme treats everyone differently because of our DNA and lymes ability to adapt. The infections have been here 4000 years or more before us humans but now we’re the the ones who get it not the animals because the ecological system has changed. STEPHEN BUHNER is the only one I know of that has researched the research if that makes sense. He has an herbal protocol for each infection. I’m going to try it. I too wanted to give up rather than suffer then my symptoms changed. I’m also going to try a Lyme support group. Chat sites like this are helpful to tell share stories and hear other people’s experiences. Lastly and most importantly we should all PRAY. This is our journey.

    Comment by Colette Cowles — February 3, 2019 @ 3:30 AM

  38. FYI Read STEPHEN BUHNER’s 2nd edition books on Lyme and the co-infections. Look up his YOUTUBE on Lyme first. I just got them and although some of the info in the front of the book is for clinicians the back of the book is for Lyme patients. LYME has been around for at least 4000 years before us. The tick infection is evolving and adapting. Most ticks scary more than one infection. They only named it Lyme disease because of the children in Lyme Connecticut where the outbreak was finally diagnosed. The infections have scientific names so we easily just call it Lyme disease and co-infections. There are more co-infections than science has been documenting. There is more than one type of LYME. It’s not just ticks that carry and infect, it’s biting flies and spiders. Each infection reacts or doesn’t react in each person. The spirochete cover themselves with a biofilm (think like cartoon or Star Trek forcefield that nothing can penetrate like a Klingon cloaking device). I know it sounds weird but I’m trying to give a visual understanding. The bio films cover the Lymes infection spirochetes so it’s not found and mostly not penetratable. The spirochetes attack the places in our bodies that have been disrupted, weak or injured. It’s easier for them to hang out there and live and grow. The point is to try to keep ourselves as healthy as possible. Some people have Lyme and never get symptoms. It’s crazy. It’s an endemic. The ticks can survive in -30 below zero….the ticks don’t like heat. If I’m lucky enough to get a night sweat I feel a bit better. We went out last night to eat and watch a play. I had to leave the plsy early because I was crowded in between people and hot and I couldn’t move my legs enough. My feet started burning and my eyes and I was going to pass out from exhaustion. I ate some cannolis and an ice cream sundae for dessert last night. Lyme loves sugar and dairy!!!!! My peripheral neuropathy is worse today!!! I personally think we all get bit by insects and won’t know which insect gave us our LYMES and the CDC HAS NOT DONE ENOUGH RESESRCH!!!

    Comment by Colette Cowles — February 3, 2019 @ 4:16 AM

  39. This web site is SOOOOOOOOOO misleading. Ticks are only one type of carrier. Any biting insect, or animal for that matter that bits an infected animal can pass it onto to humans. Mosquitos, fleas, armadillos etc. can all give you Lyme. The CDC is burying their heads in the ground on this epidemic. Especially in my home State of Florida.

    Comment by Steve Donalson — February 8, 2019 @ 9:47 AM

  40. The CDC and all other sheep following MFers running around in white coats are psychopaths. I hope karma is right around the corner and especially in this day and age. They know what their doing because they specifically did a corrupt experiment (Tuskegee on syphilis). They are all making money on sick people because they witnessed all the different effects the infection places on ones body. Treatment for all these symptoms but not the cause. Like I said Psychopaths are running the show!!

    Comment by Sharon — March 7, 2019 @ 7:44 AM

  41. Being that this article appeared on the Amen Clinic website, have any of you tried the Amen Clinic for your Lyme Disease? Just curious…I haven’t seen anyone mention using Amen to identify SPECT patterns that would suggest Lyme Disease or treatment using their protocol. I would like to hear from someone who has used Amen Clinic to diagnose or treat their Lyme Disease. My husband has dementia/possibly early onset Alzheimer’s (APOE e4 negative), and Lyme showed up positive on one of his blood tests with a neurologist. I would like to consider Amen Clinic since nothing else we have tried (1 month course of IV antibiotic, trophic support, ketogenic diet) has slowed the progression of his dementia symptoms and Lyme at this point is still merely a possibility.

    Comment by Nancy — March 29, 2019 @ 5:40 AM

  42. Yes, Igenex is great. But you have to also diagnose with the symptoms from an experienced lyme literate doctor — there are false negatives. I had lyme and 4 other co-infections and took 7 years to get diagnosed…nightmare. Holistic treatment is the only way to go for Chronic or Acute lyme. I know many people who have lyme and never saw a bullseye. Read about getting lyme from your pets…stop letting your animals lick your face, and your kids face! That is insane to take a chance of getting this terrible illness. My husband got infected with the same things as me at the same time — it is sexually transmitted…tested with the exact same things AND EBV too, both of us. Build up your immune system, and learn the truth about how to be healthy, and that is not coming from the allopathic world — learn the truth in how to be healed, and well. If you miss an immediate bite and now are chronic….I feel antibiotics are a waste of your health to even bother. I am well now even after two more tick bites. I had tested positive for:
    Borrella
    Babesia
    Bartonella
    Ehrlichia
    Anaplasmosis
    Rocky Mountain Spotted Fever
    and Epstein-Barr Virus

    Comment by Beth C Bell — March 29, 2019 @ 8:31 AM

  43. I agree Sharon — The CDC is NOT our friend…another disappointing dysfunctional governmental body. They do not know the truth, or apparently really do not want us well. Seek your own truth and care, educate yourself. Fight for yourself. I found success with treatment with homeopathic medicine using Des Bio products. It’s been a long journey but I am thankful for the healing my husband and I have experienced. Now to stop getting tick bites. Please have your tick tested and not just for Borrella but the many other devastating co-infections. It is a nightmare. I got RMSF from a tick bite 2 1/2 years ago, and my husband got RMSF last May — found the tick at 3am, took it off, and at 7am had a bullseye with a halo rash above. Went on Doxy by 10am someday and treated for 30 days 100 mg 2x day — and it did not get rid of it. He went back on the Deb Bio protocol and is almost done the vials, and will then move in to the 6weeks or move of the homeopathic detox program, that I did also for my FMSF. Had to do the detox 2x to get the dead toxic out of my body. My husband was proof that antibiotics even when administered in less than 24 hours of the tick bite, does not kill all the bacteria – it’s just false sense of security. Pray to our Creator for wisdom and trust Him for guidance. Do not put people before His leading as to what you should do. Seek, ask, pray and believe you will find healing.

    Comment by Beth C Bell — March 29, 2019 @ 8:44 AM

  44. Lymes seems to be much worse with a bad magnesium deficiency. Leg pains are a classic sign of a magnesium deficiency. The best way to take magnesium is to rub a nickel sized portion of magnesium oil on the soles of your feet daily.

    Comment by You sound like you may have a severe magnesium deficiency. Get a RED CELL BLOOD TEST to check your magnesium level. — April 12, 2019 @ 7:50 PM

  45. Diana,

    My first bite was May 2014. Got a rash that wasn’t a bullseye. My doctor would not consider Lyme disease. 5 months later, my infectious disease doctor diagnosed it. “You have Lyme disease”, he said. After Herxing, I felt much better, took 2 months on Doxy. I got 2 more bites, identified by him. He said, “What are you doing?” Sitting on the deck. He didn’t put me on IV and apologized later. I went to a Lyme Literate doctore and 2 nurse practitioners and have been 90% of myself. Please, ask for Lyme Literate doctors in your area. They can help!!!

    Comment by Jill Beyer — April 26, 2019 @ 11:40 AM

  46. I am going through Lyme hell. How did you get better?

    Comment by Robert — May 1, 2019 @ 10:18 AM

  47. You mentioned Holistic treatment. Can you give me more info. on this route?

    Comment by P E Robinson — May 12, 2019 @ 11:48 PM

  48. Sanoviv
    Go there

    Comment by Erica Anderheggen — May 20, 2019 @ 3:58 PM

  49. Thank you for HOPE

    Comment by Erica Anderheggen — May 20, 2019 @ 4:03 PM

  50. Please send me info on holistic treatment?

    Comment by Julie Simcox — May 20, 2019 @ 5:38 PM

  51. I have late stage lymes, they figured I’ve had it for years, my symptoms that finally forced me to see a Dr was memory loss could not remember what I just read to forgetting what I was going after to sever fatigue, I had other symptoms but I always chalked it up to something else, vertigo , got up to fast, aches and pains getting older( I’m 53) tightening in my chest to shooting pain, stress, vision getting a lot worse, cheater glasses doing it, I made mental excuses, I’m on antibiotics for it and yesterday I had a seizure from it. So be careful and people. I had a brain scan and MRI done yesterday tomorrow I get the results of the damage it has done

    Comment by Wanda burns — June 26, 2019 @ 12:47 AM

  52. We found a doctor in Washington DC that maybe able to help. The clinic is Jemsek specialty clinic, they specialize in Lyme.

    Comment by Rachel — July 1, 2019 @ 6:35 PM

  53. I am in need of help. 14 years living with Lyme Disease effected my heart, eyes, body. I live in Arkansas where they say there is no Lyme Disease.

    Comment by Regina Smith — July 5, 2019 @ 6:13 AM

  54. I’ve been researching treatments for Lyme disease. What treatments does the Amen clinic provide for long-term lyme disease?

    Comment by Barb — July 11, 2019 @ 10:56 AM

  55. I have similar symptoms and just starting process to get an mri. I have reached out to herbal clinic.
    Just starting to loose coordination in right lag and arm. Cold feeling under my left eye and in left arm. Fatigue comes and goes.

    Comment by james feraca — July 12, 2019 @ 8:44 AM

  56. I would reach out to a Lyme Literate doctor or an herbalist. They’re not all created equally so do your research. There are also some protocols you can try online. For instance one person mentioned on this forum… Marty Ross. He lists protocols online that are natural and conventional. Read, read, read because you are your best advocate.

    If you’re not getting better you may have coinfections too or something else that needs to be addressed. Either way this is a long road. It’s taken over my life and I want it back too.ike many of you on here I have a bad case that’s been going on too long. Not only do we have to kill this “bug” we have to heal our body from all the damage.

    I diagnosed myself and did natural protocols and saw an herbalist. I’m seeing a Lyme literate doctor right now and I’ve been on antibiotics for 2 months. I don’t want to be on them too long so I’m going to ask to switch over to natural again. The antibiotics have been kicking my butt and I thought I was going to end up in the hospital again. Herxing sucks! I do feel like it’s getting better now, so we will see what my doctor says.

    I’d recommend seeing a counselor if you have access to one as well. This is really hard to deal with and people just don’t get it. I also recommend changing your entire lifestyle. Drink plenty of water, exercise every day even if it’s just stretching, detox, etc. I hope this helps.

    Comment by Victoria — July 28, 2019 @ 4:29 AM

  57. I ‘ be been sick from early age, and now I am 48… Nobody found out why every part of my body hurts…I kept researching, till I figured out myself that I may have Lyme..I went to Germany last week to get a test for me and my two kids..7 and 18… We all have chronic Lyme…
    The place is call infusion Frankfurt
    They did tests, and found Lyme and coinfections
    We will go there Sept 9th to start the treatment
    They have tests what can find the infection…
    Infusion.org

    Comment by Mella Little — August 31, 2019 @ 8:28 AM

  58. My daughter, Melissa Little, 46, diagnosed recently with late stage Lyme and is being treated with several antibiotics, etc,; the antibiotics have kept her nauseous and very annoying metallic taste in mouth. She lost her husband, Steve Little, 40, to cancer 5 years ago. My husband and I, 72, have been fighting Lyme for past 2 years. Melissa had a foreign exchange student few years back from Germany and has visited over there. Could you please send us info about doctor/clinic/location and type treatment you and your sons will be taking? We’re located in Oklahoma and seeing Lyme doctors in Texas. Thank you!

    Comment by Dianne Stewart — September 7, 2019 @ 3:05 PM

  59. I hav chronic Lyme. $thousands out of pocket. Drs had no clue. Leg swollen and lesions, vertigo, flu like for two weeks, nosebleeds, leg tingling, brain fog, whole body vibrations. Finally naturopath did bloodwork and gave doxy. Not finished 2 months doxy yet. Some symptoms still. Kaiser HMO did not cover bloodwork $4, 084 out of pocket but if I can get cured I don’t mind making monthly payments on bloodwork. Get best insurance you possibly can. Go to good doctors. Not clinics like Patient First. Nice people but no clue.

    Comment by Danny — September 11, 2019 @ 1:01 AM

  60. Why are you lying? Less than 30% of Lyme victims get a rash amd more than 70% receive false negatives from Elisa. Its almost lime you want people to stay sick amd uninformed because its more profitable.

    Comment by Coleen Goodwyn — September 14, 2019 @ 12:19 AM

  61. Nancy check out the articles on kris Kristofferson. All the doctors were saying he had dementia. Here he had lyme diseaese with co infections. He is now get better with treatment

    Comment by Barry — September 20, 2019 @ 4:56 PM

  62. I must be dumb or something because I can’t see how the title of this article relates to the content.
    I was hoping for some revelation that the CDC USA admitted to the Dearborn scandal, the known research fraud, the Lymerix vaccine failure cover-up and more.

    Comment by Caroline Lennox — September 25, 2019 @ 5:50 AM

  63. In 1999 the hospitals and Dr’s in the Bronx for a whole year treated me horribly and as if I were crazy till I went to the er at Albert Einstein Hospital. And not only did the er Dr on call diagnose me within the hour of me being there he said “I don’t understand why no one recognized it by the symptoms you have. Plus the rash. I I will not forget the treatment I received when I knew something was wrong. A damn deer tick bit me and my life changed,my nemory,my legs were numb, facial droop and no one listened to me. Worst experience of my life. I will meet be the same again. Nothing is the same. I cry in silence because had someone gave a damn things probably wouldn’t have been so bad. My memory,focussing, concentration, and getting lost I struggle with till this day.

    Comment by Me. Jones — October 28, 2019 @ 8:41 AM

  64. Hi Beth,

    My niece has limes with all the associated conditions that you mention. She is in treatment with a well known limes (natural doctor) in San Francisco. Her symptoms are mainly brain fog. She sleeps well, and doesn’t have any body pain. Thus far, one year later, and thousands of dollars in alternative treatments, she is not much better. They are now considering antibiotics for her. Would you be so kind to let me know what alternative treatments you used that were successful. Congrats on being well!

    Best,
    Cj

    Comment by Cj — November 21, 2019 @ 11:33 AM

  65. Thanks , I’ve recently been looking for info approximately this topic for ages and yours is the best I have came upon till now. However, what concerning the conclusion? Are you positive about the source?

    Comment by GuQin — November 22, 2019 @ 3:09 PM

  66. Had/have exact the same problems. This is Neuroborreliosis. Nervous system and heart are eaten up by the bacteria.
    How are you now?
    Treatment: doxy monohydrate 200mg 3-4x/day + hydroxyquinone + azythromycin. Min 3 months, or 2-3 weeks for every remission.

    Comment by S — December 2, 2019 @ 8:08 AM

  67. My boyfriend was diagnosed with late stage.. he is irritable with explosive rage and all of the above.. has had treatment gotten was better but now it seems we are going through it again.. im so worried.. he is 52…

    Comment by Kathy my young — December 28, 2019 @ 11:04 AM

  68. How was the Jemsek clinic?

    Comment by Matthew — December 31, 2019 @ 7:07 PM

  69. Hello Jo, I am so saddened by your story and by how hard it is to get help for your daughter. I have chronic Lyme and several other conditions which are related and I too am on a journey to heal. I’m not yet there, nor am I an expert. But I will share a few things that might be of help.
    Firstly,I have found that it has worked better for me to stop trying to speak to medical professionals who have little experience and seek out who is out there no matter what the cost in time or money. I have time but no money, but this belief helps me move forward and be more empowered… I trust that I will find my way forward. With help from others.
    As you no doubt know, social isolation is a killer, and its hard to overcome when you are going thru so much. I hope you can find people who care to be part of your circle both day to day and on the net. You might want to read articles by Marsha Forest or Judith Snow who were pioneers in helping people create intentional circles of support in Canada and worldwide. I know from experience that this can change life circumstances because people together can create something that one or two people just can’t do alone. See Inclusion Press for info. Its disability related info but applicable to all of us especially when we need support.
    It seems we are at a time when things are changing and people including Doctors are on a steep leaning curve regarding Lyme and especially Chronic Lyme. The more you know and can take charge of where you go with your daughter and what occurs as treatment the better.
    For me Diagnosis has been key. After many years of illness and not knowing what was wrong my blood was sent by a Doctor to Armin Labs in Germany. The testing they do I am told is more sensitive than in the USA. For me it was helpful to have clear confirmation although this does not necessarily translate into clear action if the Doctors are not familiar with the tests or what to do.
    I am now seeking help in the USA and exploring options. One that comes to mind is Dr. Klinghardt as he has been involved with families who have a family member with a disability. He can be reached at the Sophia Institute.
    Another is Dr. Neil Nathan who wrote a book called Toxic, which explains some other conditions that can accompany chronic Lyme like Mast Cell Activation Syndrome.
    It has helped me to see this as part of my life path and to accept it and keep believing that if I persist I will find the right help. I wish you the very best and send love and prayers to you. Your daughter is blessed to have your love, advocacy and support and I know this takes much in today’s world. I pray you will be less alone and find ways to support your daughters return to health as well as to care for yourselves in this journey. A quote that helped me through a difficult time was by Wayne Dyer and it said ” Remember there are always many possibilities to a given situation”
    I wish you the very best and will send my prayers your way too. I just realized how old your post was so hope that things are better but am sending it anyway in case anything I think of might be of help.

    Comment by Cheryl AH — January 9, 2020 @ 5:08 PM

  70. RIFE treatments put my Lyme in remission. 20 minutes, once a week, for 6 months. I haven’t had symptoms in over 2 years. I’ll be getting re-checked this year. I go to The Center for Holistic Medicine in West Bloomfield, Michigan.

    Comment by Susan Randall — January 17, 2020 @ 4:21 AM

  71. Lyme disease….what a scourge upon our people in this country….!!!
    I believe the tick was weaponized and perhaps things went awry or was deliberately set amongst the populous.
    I personally know holistic doctors and in their testing they have found the Lyme bacteria in water in some cases and also in their AIR SAMPLES…!!! What is going on here folks…!!!

    Comment by John Szewczyk — January 17, 2020 @ 5:41 AM

  72. I’m so sorry. How did that MRI last year come out. I’ve had numerous medical and mental health issues for years. I was on long term antibiotics for severe folliculitis on my legs which I feel made Lyme testing inconclusive.That is so frustrating. I was just wondering how you brain imaging went after reading your post.

    Comment by KARA — January 17, 2020 @ 6:01 AM

  73. Diagnosed with Lyme’s at 35 did Byron White protocol through my naturopath. It’s been a long haul. Was able to keep my career as a firefighter, with a total of 8 months off. Glad for me, I did not do the antibiotics. Retired after a successful 25 year career.

    Comment by Jenny — January 17, 2020 @ 6:33 AM

  74. Lyme is in all 50 states now. Doctors are ignorant. Go onto lymedisease.org. They have great information, and you can print it off for your doctor.

    Comment by Lisa J — January 17, 2020 @ 7:14 AM

  75. I watched a video that a researcher (somewhere in the Midwest at a university, can’t recall exactly where) did on autopsies of people diagnosed with Lewy body, MS, Alzheimer’s, or Parkinson’s. In all cases, the brains and cerebrospinal fluid contained Lyme bacteria inside parasitic worms. My thought is that rather than Lyme being a mimicking disease, it is actually the cause. My husband has probably had Lyme now for 3 years (did have a positive Western Blot 3 years ago). He has progressed to Lewy Body Disease with Parkinson’s, sadly.

    Comment by Lisa J. — January 17, 2020 @ 7:24 AM

  76. Lyme-literate MDs don’t necessarily go by blood tests since there are so many false negatives, and go by symptoms. Bio-energetic testing claims to be more sensitive than blood tests, but most MDs poo poo these.

    Comment by Lisa J. — January 17, 2020 @ 7:26 AM

  77. Hello,
    I’m so sorry for your daughter and your suffering. Look into Bee Venom Therapy and Ellie Lobel. She developed a protocol to eradicate Lyme and coinfections with bees.
    I’m 1.5 years into a 3yr protocol and feel better. I’ve had Lyme since 2002, and probably before. They have a Facebook group full of stories of people who got their life back. It’s cheap, easy to do, and effective. Hope you are able to get thru this! Hope we all are eventually

    Comment by AK — January 17, 2020 @ 8:34 AM

  78. It would be very beneficial to speak about getting to the root cause, ie root canal infection, cavitation from wisdom teeth. Would really help your patients. I never made any progress in your care for years…until I found an MD that tried to find the root cause.

    Comment by Margaux — January 17, 2020 @ 1:40 PM

  79. It seems there has been an increase of parkinsons disease ..is it possible one of the causes of parkinsons might be undiagnosed lyme disease perhaps having been acquired years before

    Comment by Gerri Hauser — January 18, 2020 @ 4:44 AM

  80. Where is. Dr. ASponaugle located?

    Comment by Donna Martin — January 18, 2020 @ 3:03 PM

  81. This is great info but same thing goes tell the Dr and they don’t know how too treat here in Canada . I my self and Wife live in the back country donot know if we were bit by this tick but symtoms are all there .we have a dog and cat check them but is very hard too tell need a better way too check physiology .hope you try too keep updates at how to check and treat this disease.this area is in tick country!!!! Regards Mike and Brenda Mills.

    Comment by Michael Dorean Mills — January 19, 2020 @ 5:16 AM

  82. Will you please post the names of the doctors you are seeing in Texas? Thank you!

    Comment by Will you please post the names of the doctors you are seeing in Texas? Thank you! — January 26, 2020 @ 1:31 AM

  83. The scientists recruited volunteers who’d been infected with Lyme in the past, and then placed laboratory-raised, disease-free ticks on their bodies. The ticks ended up harvesting live burgdorferi from two of the 23 volunteers, meaning those study participants still had remnants of the disease in their bodies.

    Comment by Uruguay — January 27, 2020 @ 7:08 AM

  84. Email me directly your email address.

    Comment by lisa — January 29, 2020 @ 12:51 PM

  85. My son is being treated by Dr Jemsek. He is great, and if anyone gets a breakthrough with Lyme Disease it will be him

    Comment by Shirley — February 12, 2020 @ 7:11 AM

  86. The video is Under Our Skin. Very scary since mainstream Dr’s just don’t believe in chronic Lyme. Anyone questioning results need to have their blood tested by IGenix lab in California. Lyme specialty testing lab for over 25 years. Unfortunately not covered by insurance.

    Comment by Amy — March 9, 2020 @ 3:19 PM

  87. Igenix is the lab for accurate lymes and associated co-infections.

    Comment by Michael — April 3, 2020 @ 4:10 AM

  88. Who is the naturopath you saw?

    Comment by Anna O — May 18, 2020 @ 9:37 AM

  89. I have just recently been told I have lyme disease. I found a tick on me and withing a few days my legs were so swollen I could barely walk. My joints and muscles hurt a lot. I am on antibiotics but today my husband stated that we had a conversation this morning and I have no recollection of it. Can someone tell me if this is going to get better? Will things be ok since it was caught early because after reading all the post I am worried of what’s to come.

    Comment by Casey — May 29, 2020 @ 9:07 PM

  90. Hi, I had an advanced case of Lyme and bartonella and went through treatment for @2 years. Felt better but not 100% at end of treatment. Went through some relapses and did more sessions of only doxycycline to knock down the returning symptoms. Lyme is insidious- it will hide in your system and reappear many months down the road. It’s been 5-6 years now and I’m feeling much closer to normal. The brain fog is gone. Have faith. Keep after it. It can get better!

    Comment by L — August 3, 2020 @ 2:52 PM

  91. I would encourage anyone reading this article who knows of people who have been diagnosed with ALS to alert those people and suggest that they may have long-term untreated Lyme's disease.

    Comment by Janis Parker — December 2, 2022 @ 5:21 AM

  92. I am so saddened by reading some of these comments. There is help for Lyme's disease, but it is not from conventional Western doctors who were taught nothing about Lyme's in medical school. My husband has had undiagnosed Lyme's for several years-doctors never were able to diagnose his symptoms and he went years just being miserable. He was extremely achy all over and never had a night of full sleep. His brain fog was horrible. After many hours of researching on the computer, I decided to take him to a functional doctor who, through a thorough blood test, discovered he had Lyme's. A functional doctor is one that finds the root cause of an illness–instead of just treating the symptoms with prescription drugs. They do , however, use some drugs if deemed necessary in a particular situation., but they mostly use a holistic approach with natural supplements.He was put on antibiotics and supplements and within a short span was much better. However, he was still not sleeping. Then I heard about a woman in town that practices NAET ( Nambudripad Allergy Elimination Technique). She, herself, had had Lyme's as a young girl and went years and years without any doctor diagnosing her. As she was in medical school at the time, she began researching her symptoms and came up with the diagnosis of Lyme's. This led her to NAET, which is a holistic drug-free, non-invasive natural approach to treating allergies. After going to her for just a few months and being put on supplements, he is pain free and sleeping much better. It shows now that he has just 20% Lyme's left in his system and he will continue until it is completely removed. I really hope this helps someone. You can go to ifm.org to find a functional doctor in your area or research NAET to find someone practicing in your area.

    Comment by Brenda — December 7, 2022 @ 6:02 AM

  93. I wonder if it's possible that some of the problems I have had for a good portion of my life were caused by my bout with lyme almost 20 years ago when I was in preschool. I was lucky to have had that tell-tale target and my two most vivid memories from back then were of walking down the staircase to my preschool class unable to bend my legs and of going for the blood test.

    Comment by Trini — April 18, 2023 @ 10:52 PM

  94. My husband has Parkinson’s disease, he is about 63 years old it was diagnosed 2 years ago. It was getting more difficult to live for him, because of stiff muscles he couldn’t even move. Mirapex and levodopa medicines were given, but didn’t give much relief. He couldn’t eat food without choking. I thought this might be the last stage and the medications he was given did not help at all, so I started to do alot of research on Ayurveda treatments, I was introduced to Health Natural Centre and their Parkinson’s Ayurveda Protocol. He started on the Ayurveda Treatment last year, his symptoms gradually diminished including his vocal cord spasm, Muscle Weakness, Tremors and Difficulty with swallowing. Reach them at natural herbs centre . com , he is getting active again since starting this treatment, he is able to walk again ( down the street and back ) he has also resumed exercising to strengthen muscles!! God Bless all PD Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.

    Comment by Bonnie Chismar — April 19, 2023 @ 11:38 PM

  95. Thanks for your posting on the traveling industry. I'd also like to add that if you are one senior taking into consideration traveling, its absolutely crucial that you buy travel insurance for elderly people. When traveling, elderly people are at biggest risk of having a healthcare emergency. Obtaining right insurance coverage package for one's age group can protect your health and provide you with peace of mind.

    Comment by Vannessa Powderly — December 2, 2023 @ 6:12 AM

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