February 2015

Peripheral neuropathy in Lyme disease patients

2Neuro-shutterstock_196724855-copyBy Greg Gargiulo

Reported cases of Lyme disease have been rising steadily over the past 30 years, but its diagnosis can be challenging. Left untreated, patients with Lyme disease can go on to develop neurological symptoms, including those that are characteristic of peripheral neuropathy.

Francis Bean, DPM, has been experiencing neurological symptoms in his lower extremities for more than six months. When they arise, he feels a tingling in his hallux, his heels go numb, and he develops a hypersensitivity to temperature and touch that leads to a painful burning sensation. On paper, these sound like common symptoms of diabetic peripheral neuropathy—a condition with which Bean, as a podiatrist, is quite familiar.

But Bean doesn’t have diabetes. His peripheral neuropathy developed as a result of Lyme disease, and in the US, he’s one of a growing number of people with similar complications.

Lyme borreliosis, or Lyme disease, is a multisystem infectious disease caused in the US by the spirochete Borrelia burgdorferi (Bb), which is transmitted almost exclusively through tick bites.1,2 Though cases are concentrated primarily in limited geographic areas where the tick is endemic, Lyme disease is the most commonly reported vector-borne infection in the country, and reported cases of its occurrence have been rising steadily over the past 30 years.3,4

Early diagnosis and treatment are extremely important to stop the progression of Lyme disease, and most patients treated appropriately in the acute phase recover without any residual effects; however, if left untreated, Lyme can go on to cause neurological symptoms, including those that are characteristic of peripheral neuropathy.5-7

Delayed diagnosis occurs because many adults don’t recall being bitten by a tick, don’t develop a rash (erythema migrans, often in a bulls-eye pattern) from the bite, or do develop a rash but don’t notice it.8 About 10% to 15% of untreated patients will develop Lyme neuroborreliosis, in which Lyme leads to neurological involvement.4

Lyme neuroborreliosis can manifest as a number of compli­cations—including meningitis, radiculopathy, and encephalitis, as well as peripheral neuropathy—and symptoms may appear weeks or months after the tick bite.7,9,10 Unfortunately, managing Lyme neuroborreliosis presents a clinical challenge far greater than treating acute Lyme. Confirming a diagnosis can be difficult, and often neurological symptoms don’t resolve immediately after treatment with typical antibiotic therapy.11,12

“Early treatment can prevent most neurological complications in the majority of cases, and most patients can be treated early if they have the rash,” said Arthur Weinstein, MD, director of rheumatology and associate chair of the Department of Medicine at MedStar Washington Hospital Center in Hyattsville, MD, who has clinical research experience with Lyme. “But if patients don’t have the rash or they don’t receive early treatment, effective management can become quite problematic.”

2Neuro-shutterstock_139052249-copyLyme basics

In the US, the Bb spirochete is predominantly transmitted by the bite of hard-shelled Ixodes scapularis ticks.3,11 Infection requires the tick to be attached for at least 24 to 48 hours, during which time ingested blood triggers spirochete proliferation within the tick, followed by injection into the human host.11

The progression of Lyme disease is generally broken down into three stages. Stage 1 occurs three to 30 days after the bite and is characterized by fever, malaise, muscle or joint pain, and flu-like symptoms. The presence of erythema migrans may also appear and is useful for identifying Lyme, but statistics for rash appearance vary widely, and its incidence has been reported to be as low as 40% of affected adults.13,14

Stage 2, the neuroborreliosis stage, arises about one to six months after stage 1 and usually includes arthritis with associated muscle pain and swollen lymph nodes. It’s also during stage 2 that neurological symptoms like peripheral neuropathy may begin to develop in untreated Lyme patients. If it continues to progress, stage 3 Lyme disease can occur many months or even years after exposure. It indicates chronic neurological involvement and often includes chronic arthritis in large joints, especially the knee.5,15

The prevalence of Lyme varies greatly based on geographic location and season. More than 93% of cases are reported in highly endemic areas, which are mainly the mid-Atlantic and northeastern states from Maryland to Maine, as well as Michigan, Minnesota, and Wisconsin.3,11 Lyme disease also occurs in a bimodal age distribution, with peaks between ages 0 to 10 years and 40 to 70 years. Seasonal peaks are seen during summer months, when ticks are most prevalent and people and their pets are most likely to engage in outdoor activity.3,16

Approximately 30,000 cases of Lyme disease are reported to the Centers for Disease Control and Prevention (CDC) every year, though the actual number of diagnosed cases is much higher.17 This results in a mean annual national incidence of 9.7 cases per 100,000, but in highly endemic Connecticut, that figure is 74 per 100,000.2,4 Whether through increased awareness, incidence, or reporting, the annual number of reported cases of Lyme has more than doubled since 1991.3,4

“It’s possible that with the publicity surrounding Lyme, and physicians and patients being more aware of it, it may just be getting diagnosed more frequently because it’s being looked for more,” said David Simpson, MD, professor of neurology and director of the Clinical Neurophysiology Laboratories at the Icahn School of Medicine at Mt. Sinai in New York, NY .

When patients fail to receive appropriate treatment for Lyme, Bb may persist by evading the immune system and spreading infection further.18,19 This can occur in any part of the body, but Bb has a general tendency to affect the joints and the nervous system.20

“Lyme disease itself is a neuropathic disease as far as I’m concerned, because the bacterium penetrates into the nervous system and that’s how it moves through the body. The difficulty is that it tends to mutate between at least three identified forms, possibly four,” said Francis Bean, the Lyme patient described earlier, who has a podiatry practice at the Foot & Ankle Center of Mooresville in
Indiana.

Once Lyme neuroborreliosis develops, it can affect the central and peripheral nervous systems in a number of ways that span the entire anatomic spectrum of possibilities.11 But, according to Weinstein, the three major neurologic features of Lyme are meningitis, radiculopathy, and cranial neuropathy, which most often mimics Bell’s palsy.

While those are generally regarded as the most common manifestations of Lyme neuroborreliosis, other neurological complications may also arise, including encephalopathy, polyneuropathy, myelopathy, and motor neuron disease.10,11 Though firm figures are hard to come by, peripheral nerve involvement has been estimated to occur in approximately 25% of untreated patients.21,22 Richard Rhee, MD, a neurologist at Jersey Shore Neurology Associates in Neptune, NJ, who specializes in neurological Lyme disease, estimates that about 30% of patients who develop neurological complications will have peripheral neuropathic symptoms.

Only a small fraction of cases of peripheral neuropathy are related to Lyme disease. Of the more than 20 million Americans with peripheral neuropathy, about 30% of cases are due to diabetes, another 30% are idiopathic, and the remaining 40% are unevenly divided among other disorders and conditions, including Lyme.23

“On a histogram of peripheral neuropathy causes, you’d have diabetes as the major one, alcoholism as a small one in second place, and maybe twenty to thirty extremely uncommon other possible causes,” said David Armstrong, MD, PhD, director of the Southern Arizona Limb Salvage Alliance and professor of surgery at University of Arizona in Tucson, who has experience treating Lyme patients. “Lyme would be in one of those categories, and there’s so little literature on its prevalence because it’s so unusual.”

Symptoms of peripheral neuropathy from Lyme tend to be primarily sensory, occurring in a stocking-glove pattern, but patchy paresthesia may also occur. Though some of its characteristic symptoms overlap with those of diabetic peripheral neuropathy, others are unique to Lyme patients.11

“When it’s advanced, whether the peripheral neuropathy is from diabetes or Lyme, the symptoms are the same: numbness, tingling sensation, and loss of strength of muscle and control of the foot,” Rhee said.

But, in Weinstein’s experience, Lyme-related peripheral neuropathy can have a somewhat different presentation.

“It’s not chronic stocking-glove diabetic peripheral neuropathy, and it’s not associated with leg ulceration, which is mainly due to vascular problems,” he said. ”You can also get a mononeuritis multiplex, which is much more rare and affects individual motor or sensory nerves.”

Bean noted that a number of his symptoms are not typical of diabetic peripheral neuropathy. For example, he sometimes experiences hypersensitivity rather than a loss of sensation, and at other times his heels will feel numb while sensation in the forefoot is preserved—neither of which is typically seen in a patient with diabetes.

Diagnosis

When symptoms indicate that Lyme may be present, the CDC recommends a two-tiered systematic approach that measures changes in IgM (immunoglobulin M) and IgG (immunoglobulin G) antibodies along with evidence of possible exposure to confirm diagnosis. But, because Lyme neuroborreliosis frequently has clinical overlap with other illnesses, there are many obstacles to securing a diagnosis with laboratory confirmation.12,24

First-tier screening is an enzyme-linked immunoassay (ELISA), which should be performed in all suspected patients three to four weeks after initial exposure; however, serological test results may be falsely negative and misleading during the early phase of exposure due to a lag between infection and serum antibody changes.4,25 Therefore, borderline and reactive first-tier test results should prompt second-tier confirmatory Lyme IgM and IgG Western Blot tests.4

This two-tier testing system is generally accepted as reliable when interpreted properly, but some believe the process is in need of an update.2,11

“Most of the standard assays that the CDC uses are grossly outdated and they don’t find any active antibodies for the bacteria that are hidden in the body,” Bean said. “The Western Blot is more accurate, but even that will often show a lot of false negatives because it’s not sensitive enough.”

When Lyme disease is confirmed, a spinal tap or brain magnetic resonance imaging (MRI) should be considered when there is suspected central nervous system involvement.4 To make a diagnosis of Lyme-related peripheral neuropathy, objective evidence of peripheral nerve damage, either obtained clinically or through electromyography (EMG), is needed.26

“You have to confirm the neuropathy with EMG and nerve conduction studies first to document the diagnosis and eliminate other causes of neuropathy,” Rhee said.

Treatment

According to John Halperin, MD, a neurologist at Overlook Medical Center in Summit, NJ, who has authored numerous papers on Lyme and the nervous system, “Standard care is oral antibiotics and if that fails you go to IV antibiotics. The three most common are doxycycline, amoxicillin, and cefuroxime axetil.”

For Lyme neuroborreliosis without brain or spinal cord involvement, including peripheral neuropathy, there is evidence and consensus that oral doxycycline (100-200 mg twice a day) or amoxicillin (500 mg three times a day) for three to four weeks are both safe and highly effective.4,11,25 Parenteral IV antibiotic therapy, if needed, can be done with ceftriaxone, cefotaxime, or high-dose penicillin.4,10,11

Although nonpharmaceutical treatments for Lyme-related peripheral neuropathy have not been studied in the medical literature, anecdotally a number of therapies have been found to be helpful for symptom management.

“Physical therapy is important, especially soaking and massaging, and I also recommend vitamin B6 and B12 supplements, which provide nutrition to damaged nerves,” Rhee said.

Ilkcan Cokgor, MD, a neurologist at the Neurology Clinic of Marin in San Anselmo, CA, who has treated patients with Lyme-related neurological complications, takes it a step further.

“I recommend hyperbaric oxygen therapy if it’s financially feasible, as well as biofeedback, neurofeedback, acupuncture, physical or occupational therapy, and osteopathic cranial sacral massage, depending on their complications,” Cokgor said.

Damaged nerves take time to recover, and patients may continue to remain symptomatic for weeks to a few months after antibiotic treatment.11

“You can have prolonged symptoms even if the bug is eradicated,” Weinstein said. “The nervous system, like some other systems, heals slowly. Or there may permanent damage. I’ve seen patients with permanent facial weakness from Lyme, where they didn’t heal, others with prolonged but eventually subsiding pain in the extremities, because healing can take many months. This can occur from inadequate therapy, or in cases where patients don’t seek treatment early enough and there’s already been a lot of damage.”

The clinical presence of a chronic form of Lyme disease—what’s referred to as chronic Lyme—that persists after a confirmed diagnosis and appropriate antibiotic management remains a topic surrounded by ongoing controversies that are beyond the scope of this article.27-30

According to Weinstein, though, one important distinction must be made.

“There are two different terms that must not be confused: one is chronic Lyme, which is very slow healing of damaged nerves and nerve roots that can lead to prolonged symptoms for months or years,” he said. ”The other is post-Lyme syndrome, which is when patients have prolonged symptoms years after Lyme—aches, pains, fatigue, forgetfulness, and other neuropathic symptoms—and there’s no evidence that it’s due to chronic infection, and it’s not known why they still have these symptoms. Treating post-Lyme syndrome is very difficult because we don’t know the cause, and I think it takes a sophisticated doctor to sort it out and give proper treatment.”

Additional difficulties in treating Lyme complications can relate to the experience, geographic location, and clinical philosophy of the practicing physician.

“Patients can get into trouble because they may get a different diagnosis and a different treatment based on the physician they see, which is not a good situation,” Simpson said.

Because Lyme disease is prevalent on the East Coast, awareness of the risks is higher and treatment is more accessible there than in other areas of the country, Bean noted.

Going forward

Lyme disease has been the subject of extensive study over the past 30 years and a great deal is now understood about its diagnosis and treatment; however, some controversies and misconceptions still remain.4,30 The fact that some patients with Lyme are not properly diagnosed and others continue to experience neurological symptoms after antibiotic treatment has added to this and caused confusion among both physicians and patients.2,11,30

Although additional research and discussion may help improve testing methods and settle ongoing debate, experts say what’s more important now is increasing awareness and education about early diagnosis and treatment of Lyme disease—especially in geographic areas where it’s less common—and helping patients cope with long-term complications like peripheral neuropathy.2,29,30

“The problem is when it starts to spread to new areas where the doctors and the population don’t know much about it,” Weinstein said. “That’s where you can get patients who are left untreated and go on to get more serious issues. In endemic areas, where Lyme is common, patients should know that Lyme can cause these complications.”

Symptoms of peripheral neuropathy in patients who do not have diabetes or other obvious underlying conditions should prompt practitioners to consider Lyme disease as a differential diagnosis, Rhee said.

“Physicians should always ask if there’s been a tick bite, and you should always consider that as a possibility if their symptoms suggest it,” Rhee said. “You have to think about the disease to make a diagnosis.”

Greg Gargiulo is a freelance medical writer based in the San Francisco Bay Area.

REFERENCES
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  2. Hildenbrand P, Craven DE, Jones R, Nemeskal P. Lyme neuroborreliosis: manifestations of a rapidly emerging zoonosis. Am J Neuroradiol 2009;30(6):1079-1087.
  3. Centers for Disease Control and Prevention (CDC). Lyme disease: United States, 2003-2004. MMWR Morb Mortal Wkly Rep 2007;56(23):573-576.
  4. Younger DS. Lyme neuroborreliosis. In: Watts RL, Standaert DG, Obeso J, eds. Motor Disorders. 3rd ed. Brookfield, CT; Rothstein Associates Inc; 2014:575-580.
  5. Lyme disease. The Foundation for Peripheral Neuropathy website. https://www.foundationforpn.org/livingwithperipheralneuropathy/causes/lymedisease.cfm. Accessed January 30, 2015.
  6. Lyme disease & other tick-borne illnesses: The Carolina Center’s approach. Carolina Center for Integrative Medicine website. http://www.carolinacenter.com/lyme-disease.html. Accessed January 30, 2015.
  7. Lyme neuroborreliosis. Lyme Disease Action website. http://www.lymediseaseaction.org.uk/wp-content/uploads/2013/05/LDA003-2-web-version.pdf. Accessed January 30, 2015.
  8. Pachner AR, Steiner I. Lyme neuroborreliosis: infection, immunity, and inflammation. Lancet Neurol 2007;6(6):544-552.
  9. Dryden MS, Saeed K, Ogborn S, Swales P. Lyme borreliosis in southern United Kingdom and a case for a new syndrome, chronic arthropod-borne neuropathy. Epidemiol Infect 2015;143(3):561-572.
  10. Rizvi S, Diamond A. Neurological complications of Lyme disease. Med Health R I 2008;91(7):216-218.
  11. Halperin JJ. Lyme disease and the peripheral nervous system. Muscle Nerve 2003;28(2):133-143.
  12. Aguero-Rosenfeld ME, Wang G, Schwartz I, Wormser GP. Diagnosis of Lyme borreliosis. Clin Microbiol Rev 2005;18(3):484-509.
  13. Steere AC. Lyme disease. N Engl J Med 2001;345(2):115-125.
  14. Johnson L, Wilcox S, Mankoff J, Stricker RB. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey. Peer J 2014;2:e322.
  15. Stonehouse A, Studdiford JS, Henry CA. An update on the diagnosis and treatment of early Lyme disease: “focusing on the bull’s eye, you may miss the mark.” J Emerg Med 2010;39(5):e147-e151.
  16. Lyme Disease. Confirmed Lyme disease cases by age and sex: United States, 2001-2010. Centers for Disease Control and Prevention website. http://www.cdc.gov/lyme/stats/chartstables/incidencebyagesex.html. Updated December 6, 2013. Accessed January 30, 2015.
  17. How many people get Lyme disease? Centers for Disease Control and Prevention website. http://www.cdc.gov/lyme/stats/humanCases.html. Updated August 23, 2013. Accessed January 30, 2015.
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  19. Steere AC, Glickstein L. Elucidation of Lyme arthritis. Nat Rev Immunol 2004;4(2):143-152.
  20. Mygland A, Monstad P. Chronic polyneuropathies in Vest-Agder, Norway. Eur J Neurol 2001;8(2):157-165.
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  22. Coyle PK. Lyme disease. Curr Neurol Neurosci Rep 2002;2(6):479-487.
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  29. Ljøstad U, Mygland Å. Chronic Lyme; diagnostic and therapeutic challenges. Acta Neurol Scand Suppl 2013;(196):38-47.
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19 Responses to Peripheral neuropathy in Lyme disease patients

  1. I have Lyme Disease. Lyme mimics more than 360 different conditions, including MS, ALS, CFS, ME, Vestibular issues, Fibro etc. I have been misdiagnosed for 8 years and told that it was all in my head! After I paid to have a private test in the USA I found out that it was Lyme. You do not have to have the rash, the flu like symptoms etc to have Lyme. I never had any. It can lie dormant for up to 30 years (symptom free), it can also be spread by any arthrpods. ie: fleas, mosquitos, ticks, sand fleas. It can also be passed in utero, sexual contact, raw milk, blood transfusion and organ transplant. If you want to know the truth surrounding Lyme Disease there is a great site called Stop The Lyme Lies. They set the record straight. Normally (if you are lucky) you will be offered 2-4 weeks of antibiotics from the NHS. This will not kill Lyme. You may feel better, but Lyme spirochetes hide inside of biofilms, which antibiotics cannot penetrate. You must burst the biofilm to expose the bacteria if you are ever to get well. Lyme never travels alone. There are normally co-infections (opportunistic infections) that come with it such as Babesia, Bartonella, Mycoplasma etc.Some of these co-infections are viral, bacterial and also fungal, so antibiotics won’t address these issues. So much misinformation on this horrible disease. Take it from someone that has Lyme…. Antibiotics do not work. You will have to think outside of the box to recover from this!

  2. Selma apovian says:

    Great article
    Got tested for Lyme over 5 years ago and I asked for test
    Sure enough in my blood no one ever figured but all I’ve had seem to lead up to it with no bulls eye except having a tick on me once
    Really no symtoms
    Been treated twice over years with antibiotics
    I just developed a small itchy rash now an then which seems to go away for awhile using a cortisone cream doctor gave me
    But now I read on this Lyme neuropathy an think I got it
    Feet definite feel it an I have been on my feet all my life for work
    So was no sure have seen foot doctor say raynaughs desease
    Saw neurologists said I was in great shape
    Where do I go
    My doctor recommended Lyme specialist which I think I will take her up on it
    Any suggestions welcome
    I live in nh born raised on farm an 74 active good health
    Loved the article thanks

  3. Carol Wheatley says:

    I was misdiagnosed for yrs with Lyme and Babesiosis. Told I was crazy , lost my lively hood. I’m now broke and the neuropathy pain in my Lowe legs and heels in my feet is agonizing. I can’t get any help from the drs in VT . They know little and care less . Sad when your horse gets lyme your VET says get a genetic lab to do my lyme test . I had lyme the whole time. After 4 tests the drs from Vt To Ny said I didn’t have lyme I went to the drs 39 visits , and testing over the last 4 yrs. I’m broke. Went to Columbia NYC. There incompetent , and they couldn’t figure it out. John Roberts in the Nerology Dept dismissed me . Don’t Go To Columbia. I just wish I could get the pain in my heels of my feet to stop. It’s worse there then any other place , though I hurt all over. I just don’t know what to do. it’s been over a yr from antibiotics and perisite treatment for the Babesiosis and no relief yet. I need to go back to work !!!!!

  4. sarah says:

    I’ve Lyme Disease since Aug ’19. I’m now seeing 2 specialists, and on significant amounts of Gabapentin. However, I still have severe nerve pain that one starts it doesn’t stop until hours later.My stamina has decreased significantly and my drive is just about gone.Does anyone have suggestions on who or what I can see or do next?

  5. Graham Ledbrook says:

    I am 66 male living in Southern England I suspect I have Lyme disease as I had a tick bite around September 2019 and noticed a red rash about 4 weeks later as in November 2019 I awoke with loss of feeling in my right leg. It improved in about 2 hours so took dog for a walk. I felt very ill during the walk and had to sit for about 15 mins. Another dog walker helped me home. I had urgent DR appointment and was given 7 days antibiotics. I soon improved. Late November I suddenly started having very bad leg pains both legs whilst in bed. Saw Dr and was prescribed Volterol cream to help. The pains have continued.
    From then onward I got tingling in my feet. my Tinnitus got worse and couldn’t use my hearing aids then had balance problems and started falling down, my eyesight became blurred, I have difficulty in reading, I have permanent neck ache, I have difficulty when rising from sitting position as my knees are very weak. My legs feel heavy and around my ankles the skin is very sensitive and just touching them is painful . I suddenly collapsed one morning and the Dr called and I was I sent to hospital. I have now been given 21 day course of Doxycycline which is starting to improve my health. Blood tests came back negative for Lyme. but this can occur .
    I had many symptoms of Lyme which I used the Internet to check using only recognized web sites and I consider I have Late Stage Lyme. I have to attend out patients at my local hospital for further tests

  6. Elizabeth Brown says:

    This article confirmed much of my experience with Lyme disease. I live on Long Island. I had a lapse between the appearance of a bulls eye rash on the side of my left knee in 2010 and the diagnosis of Lyme several months later. The doctor who saw the bulls eye had said it was not Lyme. I developed fluid in my right knee and the orthopedist who drained 100 cc’s during an arthroscopy did not identify the Lyme. He told me I had something strange but he didn’t know what it was. A friend suggested I ask for a Lyme test when several appointments with an infectious disease physician yielded no diagnosis. A Lyme test came back with a very strong positive Lyme. A ten day course of Doxycycline IV was administered. It was a difficult treatment because the antibiotic made me feel very sick. Ten years later in 2019 a tick became somehow lodged under the skin of my left elbow over the Memorial Day weekend and was extruded in a biofilm (?) sac after causing extreme itching which I relieved by running hot water over the itchy area for three days. before it extruded itself. The tick was too degraded for the lab to identify as a deer tick but I was given a dose of doxycycline. Three weeks later I developed a painful right ankle with ascending redness and negative lab results ordered to check for infection. Several doctors reluctantly identified a possible tick involvement and prescribed oral antibiotics over the next weeks. The neurologist to whom I was referred found that I had muscle conduction tests of less than twenty on right foot. I never had the clumsiness or problems with falling that was anticipated by the neurologist. Ii am over 80 years old. I have never had diabetes. After five months of advancing symptoms of peripheral neuropathy which spread to include my left foot, ankle, and both lower legs the neurologist suggested I have a spinal tap to test for the presence of Lyme. I had positive Lyme in the spinal fluid. I completed on March 24, 2019, a 28 day infusion of ceftroaxine. My symptoms during treatment became focussed on feet and lower legs and are still excruciating with nightly awakenings from pain, hypersensitivity, burning. The symptoms became worse during the 28 days of the infusion. It was encouraging to read from this article that I may get further relief within the next months as inflammation subsides from the antibiotic infusion. The prescribed cream, Diclofenac Sodium Topical Gel used alternately at night with Aspercreme with Lidocaine has helped relieve pain. Twenty minute wraps with ice packs (with three hour intervals between applications to prevent tissue damage,) and before sleep help relieve lower leg and foot symptoms and let me sleep. I’ve had associated generalized itching that subsided with the IV and I now experience excessive fatigue.

  7. Tamara says:

    Hi there, when i first had been bitten it was 8 years ago. I went to the doctor because the spot on my forearm kept getting bigger and there was something hard in the center but, at the time i really didnt know anything about ticks or there bites. The doctor went on google in the office because she never seen what was happening on my arm before. She came up with the conclusion that I was bitten by a recluse spider. I am terrified of spiders so i knew that huge thing could not have been on me. She prescribed me a strong dose of hydrocortisone cream and the spot did eventually disappear so i didnt think anything of the bite until 4 years ago when my symptoms started. Numbness in my feet eventually going up my calves, loss of balance, walking like i was drunk all the time, lost 20lbs, i was not remembering simple tasks, losing my bladder control and severe lower back pain which inhibits my walking if i dont sit right away. Over the 4 years i did so many mri’s, brain ct scans, back and chest xrays, ultrasounds etc. Eventually my dr. Sent me to a neurologist who “confirms” i have MS. Tries to put me on copaxone i said, NO. Tries to put me on another 40,000 medication but, something just kept telling me not to do the treatment. I kept doing my own research got tested for lyme and of course it was negative here in Canada the tests are not proper. I know that now. I found a holistic treatment place that has there own type of tests and after 3 weeks i got my diagnosis of neuro borreliosis which i am currently being treated for and I am taking alot of supplements and i have to admit i am starting to feel alot better. Dont give up guys you have to do your own research these doctors dont care about you or your health just money its so sad

  8. Sabih says:

    Hey @carolwheatley, did anything change with your heel pain? I’ve been having the same issue! Let me know please, my email is srahman8088@gmail.com!

  9. Susan says:

    I’ve got lyme too. This all sounds so familiar.. many Drs, ect. Found an Llmd here in Louisiana. Treatment for 3 years. So still sick. . Still have lingering problems so I question chronic Lyme vs post Lyme syndrome. Like many, it wrecked my marriage and I could not work for several years. I’m an Rn, and now have a work from home job thank god. I think my best bet is yo go back to llmd and see what he says before I get any sicker. Mimics 360 different diseases.

  10. Dale Olson says:

    Back in 1992 i was getting dressed to go to work and my wife noticed 3 bullseye rashes on my back.
    She told me you better make a doctors appointment, i was feeling fine and neither one of us knew anything about lymes disease.I told her lets wait and see how it looks tonight, we did that and the rash seemed to be fading. Several months after that i became very sick, it was summer time, my whole body ached, every joint, muscle and even the hair on the top of my head hurt when i touched it. i had a terrible time sleeping, as my body would not relax.I did not have a sore throat or congestion but i ached like i had the worst flu ever.I went to 3 different clinics/doctors had the lymes test and it was negative, could not understand how i could feel so sick everyday and wouldn’t just die. finally went to a clinic /doctor about 50 miles from my home.This doctor thought i had fibromyalgia so he treated me for that.He prescribed some mood meds and pain medicines, This DOCTOR actually called me at my home the next morning before i went to work, he was very concerned about my well being.I was getting some relief and at this time, i was still able to go to work and the meds he prescribed gave me some relief. I started getting full body massages weekly and acupuncture weekly. The treatments gave me relief for only a few hours every week but it relaxed my body for that short time and it helped me keep my sanity. My doctor would have to switch pain meds often as they would only work for short periods.I tried every pain med under the sun, we had to be careful as i was still working and driving.
    luckily i was not addicted to pain killers, i would start to itch if the dosage got very high.I asked my doctor to refer me to a rheumotoligist. The first thing that doctor said was where do you you hurt the worst, i said hands, feet and my back, they x rayed them all and the result was i needed to see be seen by an orthopedic doctor because of the degenerative arthritis i had in the areas that were x rayed.
    I had both large toe joints replaced and that gave me awesome relief in my feet. Was 56 yrs old at this time and it had been 2 years since i had the bullseye rash. Fast forward a couple more years and i was diagnosed with peripheral neuropathy……my feet were going numb, i was not diabetic so that was ruled out.I saw neurologist and they said it was idiopathic neurology ,several yrs. after that i went to the Mayo clinic as the numbness had progressed to the calves in my legs and upwards towards my thighs.After 2 plus days of testing there diagnosis was the same, they told me to stay strong in my legs and watch your weight so you don’t loose mobility because if you do there is really nothing that can be done to get it back. This brings us to my 76 year, i have right knee replacement scheduled for 5 days from today. I had some arthritic bone spurs removed in my back last October which gave me tremendous back pain relief. Both my hips are in need of replacement but my knee spoke louder.
    I have managed this pain for 25+ yrs and used some pretty strong meds to get me through it so i could lead a normal life and i have…….for the most part.
    Thats my after Lyme’s life story.

  11. Like this article. My story reads like so many other Lyme sufferers. My DX was hidden to so many doctors all my life starting with benign lymph node biopsy at 13, immediately followed by back and neck pain. The swollen lymph nodes tooks years to subside and at 18 with the back pain still troubling me, I developed a bout of lung pleurisy followed soon after by heart tachycardia and arrhythmias which lasted on and off for a few years. At 42 and on heart meds I get pneumonia and again the doctor is scratching his head as to why. All non-specific and idiopathic, none of this ever raised any major alarms for any doctors treating me. Low energy, periodic difficulty sleeping and ringing in ears, morning fatigue, back aching and much more varied symptomology, nothing was ever debilitating. I just fought through as best as possible, after all, what was the choice? Not any one of the symptoms pointed to a deeper issue.

    Finally at 50, depression sunk in with financial and social pressures of life swallowing me. I was unable to cope after I developed serious nerve related symptoms within a few weeks, making those around me all think I was going crazy. After what should have been a routine dental root canal and mercury filling removal, the mental toll and exhaustion from continuing pain and associated mood problems sent me into a spinning crisis. The weeks and months following found myself spiraling into a paranoid and panicked state after some doctors mistakes and a false positive blood test showing I had cancer. I was in a desperate rush of health research to find some answers to what I was experiencing. This terrifying season ended terribly with me losing a beautiful marraige and causing my business to come to a crushing halt. Had I listened to what most of the doctors were telling me, I would have been on all sorts of psych drugs and honestly probably would have ended been homeless on the street.

    After visiting multiple Neurologists, Rheumatologists, Cardiologists, Pulmonologists, Oncologists, Gastroenterologists, Psychologists, Psychiatrists, the best of them at Cedars Sinai and UCLA, a muscle biopsy and even a two week stint at Mayo Clinic in Arizona, none of them put together the answer for me. It was only by trial and error of what did seem to alleviate some symptoms and researching myself after recieving all the testing results did I end up seeking out Dr Steve Hyjek of The Functional Medicine Center in Irvine CA. Now 5 years past my midlife crisis, I have learned it wasnt all in my head, or simply idiopathic after all. Through some specific testing and treatments from Dr Hyjek, I have finally begun to make sense of the many “footprints in sand” to my history. I have come to learn that it was Lyme with coinfections of Mycoplasma and EBV all this time that have been dogging my immune system all these years. With Dr Steve’s treatment and nutritional guidance, the neuropathies, fatigue, cognitive difficulties, arthralgias, inflamations and pain have all begun to normalize. I have been “retracing” some of the autonomic natural feelings that I thought left me for good and I am now beginning to feel young and strong again. My health is still a challenge but I feel so much better and the final solution for me was mostly outside what the mainstream medical advise was. Stay strong!

  12. shauna leefe says:

    where do you start when you have been misdiagnosed with ms, and you know you can probably heal yourself and rid yourself of lyme and that’s the underlying disease you actually have? We have seen a lyme specialist in Calgary but the process is pricey and long! do you know where or what we can use to attack the lyme and start to heal?

  13. Terrye Edye says:

    I have been fight it since 2015 the burning feet ,facicualations in my calfs ,sore calfs ,brain fog,all the time but worse on for a ups ,had every labor blood test for Lyme you can think ,can’t get a positive test,did have a Igenex test done had a band but incaclusive ,also had the urine Lyme test that did have some issues but it dosent go along with the CDC guidelines so the doctors won’t accept them and I payed a lot for those test ,just say you have neruopathy ,and that’s it ,now they have me going for a PVD test next after 5 year of misery they still can’t tell me ,I have told them it’s Lyme I know my body I am not myself,had 1 week of doxcylin that’s all

  14. Susan says:

    I was diagnosed with Lyme disease 16 months ago. I didn’t feel well, couldn’t lift my arm and had over 20 spots all over my body. Took medication and got it under control. Had a few flare ups but they were minor. All of a sudden my body feels like it is vibrating. From my waist down through my legs. Not sure if this is part of the disease? It is annoying. Anyone know?

  15. Stacey Pinegar says:

    Dr Smith at Lymestop seems to have a great cure for Lyme. I had my first appt with him in September with a check up coming in February. I am hopeful but they assure me that my symptoms can still last up to a year after treatment but I can deal with that because I’ve been sick for 20. I ordered a book from Amazon called New Paradigms in Lyme Disease. There’s a chapter in there about Dr Smith. He also has a great podcast on the website Lymestop. Hope this helps. The disease is REAL

  16. Edwin Hendrix says:

    This information has been helpful…i carried lyme disease for more than 10 years…now have severe nerve pain in my feet..have been to dozens of Dr’s and no medication will help my pain..someday’s i want to die because i know tomorrow will be just as bad with my severe pain in my feet.Does anyone have the same pain i have…has been a living hell for me for over 15 years..i was 48 years old when i got the disease..am now 77..God i wish i could quit hurting.

  17. Susan Rothkopf says:

    I have chronic lyme as well. I went through 3000 amoxicillin a day for over 2 years. Took 5 years for the test to show positive, tested every year. Unbelievable that they allow these tests to remain weak! I have lingering pins and needles feelings daily. Goosebumps actually hurt! My doctor recently passed away and I really don’t know who to go to. Lyme literate doctors are so outrageously expensive and out of pocket, it’s a shame. So sorry for everyone’s continued discomfort!!

  18. Sharon Douglas says:

    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, There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased my anxiety a bit. Our primary physician recommended me to kycuyu health clinic and their amazing Lyme treatment. My symptoms including chronic fatigue, joint pain and rash, disappeared after 4 months treatment! The herbal treatment is a sensation.. My Lyme disease is totally reversed! this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier

  19. Jeanne Trudell says:

    I’m headed to see my 4th neurologist next month. I developed the neuropathy about 5 years ago, along with extreme fatigue, and yes I also have terrible heel pain. I used to hike in the rocky mountains every weekend, even found a tic on me once. But my doctors aren’t even investigating lyme. My 1st EMG said mild peripheral neuropathy, my next one says, bilateral peroneal neuropathy, we’ll see what the 3rd one says. I wish someone would figure this out, because I’m miserable, I’ve never felt so useless in my life.

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