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In their article published in the journal Frontiers in Medicine, the authors state, “Results from the physical exam and laboratory testing our sample of patients with PTLDS did not show a pattern of significant objective abnormalities.” However, “the most notable exception was the higher rate of diminished vibratory sensation on physical exam among participants with PTLDS.”
Following treatment for Lyme disease, it is uncommon to find “objective clinical manifestations” in patients with PTLDS, according to the researchers. In fact, “a much more likely scenario after treatment is the persistence or development of subjective symptoms without any residual or new objective manifestation.”
But the authors did discover a collection of symptoms among the Lyme disease patients which, when looked at as a whole, indicated the presence of problems post-treatment. For example, “Although only found in a small subset of our sample (3.4%), two participants met criteria for postural orthostatic tachycardia syndrome, an autonomic condition that has been previously reported following Lyme disease.”
Meanwhile, nearly 32% of the PTLDS patients reported having “severe sleep difficulty,” 5% had “severe visual clarity issues” and 8.3% experienced photophobia.
In fact, researchers identified 19 diverse symptoms which they considered diagnostically and clinically relevant. Out of the 19 symptoms, 9 were especially significant and included fatigue, joint pain, focusing/concentration, muscle pain, memory, finding words, sleep, neck pain, and irritability.
The findings of severe fatigue, pain and cognitive complaints should not be surprising given that at least one of these symptoms was necessary to meet the Infectious Diseases Society of America’s (IDSA) criteria for Post-treatment Lyme disease syndrome. [2]
What is surprising is that no one in the control group had severe fatigue, pain or cognitive complaints. But 50% of PTLDS patients reported severe fatigue, 28.3% reported pain and 23.3% had cognitive complaints.
[bctt tweet=”50% of patients with Post-treatment Lyme disease syndrome have severe fatigue. ” username=”DrDanielCameron”]
The remaining symptoms of PTLDS were paresthesias (tingling sensations), low back pain, headache, photophobia, dizziness, visual clarity, chills, coordination, sweats, fasciculations (muscle twitches), breathing difficulties, urination changes, and nausea.
This study supports what many Lyme treating doctors have found in their practices: patients who are treated for Lyme disease can suffer from a range of chronic, persistent and sometimes debilitating symptoms.
Related Articles:
Children in the Netherlands remain ill with Post-treatment Lyme borreliosis syndrome
Doctors say you are cured but you still feel the pain
Fatigue can be overlooked as a “sign” of Lyme disease
References:
- Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
- Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
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I have all those symptons and I stopped treatment in 2013 after 2 1/2 years. I have good days and bad days and now learning to live with all this. Just keep my immune system boosted. I would love to wake up one morning and say I feel wonderful but know that isn’t going to happen. Barbara
Sorry to hear you have some bad days. Too bad there is not a test to validate that a tick-borne infection has cleared.
The test is common sense, while we suffer everyone is running around making a nice living off our suffering. How come 20 years later I can take 3 months of Doxy and herx my butt off and after stopping I can feel pretty damn good for a few months before I
I start to tank again. Now no one will give me doxy cuz I have had runs of V-tach as part of my herx. No one will give me a defibrillator either to save me if I have a possible fatal event. So doxy helps chronic Lyme (post lyme syndrome) because I still have Lyme but Dr.”s on health insurance payrolls inform the government and public differently so they can make nice livings. Its B.S.!
Barbara, I feel the same. Everyday different but the same. Thank you for posting. I feel if we could talk with each other about our symptoms that might help emotionally.
What a profound but accurate statement “Every day is different but the same. My issue is chronic fatigue, although it has been over 3 years I feel like I have never gotten my energy level back. I would welcome any sound advice or suggestions from anyone who has experienced this and has had success overcoming this ongoing feeling.
I was diagnosed with Lyme disease in 2004. I was given antibiotics, which seemed to help. However, I still suffer from some of the symptoms, such as chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. The inability to walk right etc, are temporary and generally happen when I am really tired and have been working hard. I lost touch with reality. Suspecting it was the medication I Went off the antibiotics (with the doctor’s knowledge) and started on Lyme disease natural herbal formula I ordered from GREEN HOUSE HERBAL CLINIC, I spoke to few people who used the treatment here in USA and they all gave a positive response, my symptoms totally declined over a 6 weeks use of the Green House Lyme disease natural herbal formula. I’m 70 now and doing very well, the disease is totally reversed! (Visit their website www . Greenhouseherbalclinic . com) I am thankful to nature, herbs are truly gift from God. I can now go about my daily activities and the pain is greatly diminished. Don’t give up hope, fellow sufferers. Share with friends!!
Hi,
You had treated my older son and me as well in the past and we greatly appreciate all your help!
My youngest son has been on doxycycline for 4 weeks, he is 14 years old. Originally he had a headache and nausea, at first we thought it was a stomach bug, but then went to the hospital to get antibiotics. We also ruled out a concussion. He was treated for 4 weeks and is on last pills . He was really feeling better and now he is having fatigue, he says he isn’t sleeping well. He has missed weeks of schoolCan the doxycycline be affecting his sleep? What should be our next step, should I be doing anything to help him with the antibiotics? Is there any way you could get in touch with me. We will be making an appointment, I haven’t slept in days myself and we are all really struggling If there is any way you can get in touch with me I would greatly appreciate it.
I am happy you and your son have done well. I am sorry to hear your 14 year old child is sick now. Give the office a call at 914 666 4665
I believe my eye issues are symptoms of PTLDS as the eye discomfort when looking down started with other neurological symptoms prior to treatment (at 10 months post infection) and still remains to some degree long after 3 weeks of doxy. Coupled with increased IOP, pupil abnormalities and possibly a mildly drooping lid.
I don’t like the term “Post Treatment Lyme Disease Syndrome” also referred to as “PTLDS”. It implies that a persistent infection has been ruled out. A third of patients remain ill after 3 weeks of doxycycline at 6 months. You have been ill for 10 months. It is important to be evaluated by a neurologist and ophthalmologist in addition to looking at a tick borne illness.
Hi Dr Cameron – could PTLDS be responsible for enlarged mesenteric and pre-aortic lymph nodes? Have been through treatment (oral and IV) but many symptoms still linger. Wondering if its just cos everything is out of whack and needs time to heal or if it could be (as my specialist and GP are thinking it is) a virus playing havoc. Bitten 2 years ago, treatment since late January 2018. Thanks heaps.
I am not sure lymph nodes are related. I work up my patients to rule out other illnesses. It can be difficult to be sure a persistent infection is not a cause of the other issues.
I was treated with the normal doxy for about 2 months and continue to have joint pain, But now have low T3/thyroid issue which I’m not sure is related. As I feel my immune system was compromised by the Lyme. Not sure if these are related. Also, don’t know if the residual effects of the disease can cause stomach problems like IBS. I’ve read this, but cannot find a straight forward answer. Evening having issues consuming red meat or pork. Almost like an allergic reaction
The thyroid numbers are often off during Lyme disease. Stomach issues are also common. It can be difficult to be sure Lyme disease and co-infections have resolved. You should consider looking at Lyme disease again, perhaps with a different treatment if your other specialists cannot resolve the issues.There are researchers studying red meat allergies after a tick bite.
My husband tested positive for lyme disease about 4 years ago. He was given antibiotics. Ever since he has had chronic pain in his hips and shoulders. He does not sleep well as he says pain wakes him up. He is stiff when he wakes up and it takes a few minutes for him to get his balance. I thought the pain or stiffness was causing his balance to be off in the morning but he says that is not it. He just feels like his balance is off and it takes him a little while for him to get his balance back. I have taken him to a physician and two orthopedic doctors thinking it was arthritis. The physician is at a loss as his blood work is good, and the orthopedic doctors have told us his arthritis is minimal and would not be causing these symptoms. He also has no energy anymore. Could this be lyme disease, and if so, what can be done for him? I am at a loss in finding how to help him.
You should include a doctor with experience treating chronic manifestations as part of your evaluation. Call my office at 914 666 4665 in New York if you need help.
Hi, I seem to have PTLDS. every 6 months or so, my FITbit shows a radical decline in my resting heart rate…40bpm.. (due to PVC’s which are not recorded as beats) and blood work shows that indeed I have Lymes. I take the medicine (my 5th regimen), and after a couple of weeks and the resting heart rate goes back up to 60bpm. The effect is nearly immediate. BUT lots of joint pain. and I don’t sleep at all. No problem with the brain/vision, fatigue etc. Do we just live with it and deal with the symptoms, or can we stop this? I’m VERY active at 65…Hiking in the Alps a couple of months ago…basketball with college kids…5k’s. Do I cause the recurrences by too intense of exercise? If this is a solvable problem, I’d like to solve it. If this is a new normal, what adjustments do I need.
There are doctors who use the term “PTLDS” to suggest the problems are a syndrome rather than a persistent infection. I find you heart rate changes have not been studied i sufficient detail. I cannot tell without an assessment whether additional treatment is a consideration.
Nevertheless, I am encouraged that retreatment continues to help.
Same here, got all the Post Treatment Symptons. Medical Community unable to officially diagnose and had to do my own research. I had Lyme Disease twice, yet tests are negative after treatment.
I was bitten by a tick in spring of 2017. Had no symptoms other than hot flashes for a couple weeks (which I attributed to menopause), a very painful jaw and neck in the fall, followed by appendicitis which required surgery, and then tremors, and muscle fasciculations. I tested negative on the Elisa and positive on the western blot in May 2018 and was given 7 weeks of Doxy.
The muscle fasciculations are the most troubling because now I am testing negative for the Western blot and Elisa and infectious disease Dr here in Hudson Valley is saying more indicative of motor neuron disease. I am really scared now and have an appointment with a neurologist. Any advice/feedback would be appreciated-thank you!
I follow my patients closely. It is important to see a neurologist. I also look at whether there is any evidence of a continued tick borne infection.
i had lyme disease back in 2014 or 2015. i was treated with doxy and the symptoms went away. fast forward to about 2-3 years ago, i started showing some weird neurological symptoms. sometimes i couldnt find the right words to say, or i would think of two at the same time and mix them together and i would just stumble on my speech. i also noticed that my memory has deteriorated since then. i spent years thinking something was wrong with me, or that i had some kind of mental disorder. i never had any joint pain really, but i related to some of the neurological signs, which concerned me.
You should be evaluated by a doctor experienced in treating Lyme disease in addition to your other specialists in case there is a persistent infection.
Can lyme happen without joint swelling but neuromucular control issues?
Yes. The first Lyme disease cases typically presented with joint pain because they were described by rheumatologist, e.g., Dr. Steere.
I had a tick bite on my stomach in the spring of 2017. There was a rash (but, not a “bulls eyes” pattern) and extreme itching. I noticed some light-headedness and lymph node swelling in my neck. I tested negative for Elisa and Western Blot, so no antibiotics were given. Then this spring I started with foot and leg weakness and extreme calf cramps and calf muscle wasting, with fasciculations, in one leg. Early (preliminary) diagnoses were concerning for ALS and (since I also tested serologically-positive for shistosomes) neuroshistosomiasis. One very interesting lumbar/thoracic MRI finding was an enhancement of the nerve root, which could suggest infection, inflammation, and even infestation. Treatment for the shistosomiasis (steroids and Praziquantal) resulted in no change.
Desperate for an alternate diagnosis, I paid for the IGeneX testing, which yielded positive findings for both Lyme IgG and IgM. I underwent oral Zythromax and Cefdinir treatment for 25 days and then IV Rocephin treatment for 28 days. Other than the alleviation of daily fevers in the evening and nighttime sweats, I feel no better. In fact, the fasciculations have spread to my other limbs, back, and sometimes my chest. My leg is very weak requiring me to use a leg brace and a cane to get around. Is there any sense in me pursuing further Lyme treatment, and if so, would you recommend me making an appointment with your office?
SD, have you found a diagnosis or treatment that suits you? Our situations sound very similar.
Hi Dr Cameron! I was diagnosed in dec of 2013 and was in and out of treatment until I was able to find a proper llmd close enough to treat me for lyme, babs and bart. I have been in so called remission for about 2 years now. I came across this article bc I was looking for a correlation between lyme (or post lyme treatment) and possible depression. My biggest complaint is fatigue (lack of energy) and some sleep issues. I get occasional joint pain but nothing like before. I guess my question is, what are your thoughts on depression after treatment? Or can I just be feeling “depression” due to lack of sleep and energy?
Thank you for your thoughts!
I often have patients with a combination of fatigue, sleep issues and depression after treatment. I also have depressed patients. I often find antibiotics helpful for patients who had thought their problem was “PTLDS.” I have also had patients where treatment for depression has been helpful.
I was infected 9 months ago but was not Lyme free until 5 months later and have made very slow progress each week with what I can do. I’ve had none of my original symptoms since then and I feel “well” except for severe fatigue and annoying memory issues and neck muscle problems (through bad posture). I am certain I am not still infected but experiencing after effects of inflammation. I feel like I will never shake this off and am becoming despondent. Am I likely to always have these problems. I can find scant info on less severe forms of PTLDS.
There is little information on less severe forms. You may benefit from a second look at tick-borne infections. You should also be sure there is no other illness.
I was diagnosed about 4 uears ago because I was experiencing muscle and joint pain. My Dr. happened to do the blood test giving me a positive result. I tried a 2wk does of dox that didnt work. Then he gave me another kind that made me sick so I couldn’t take it. So I just hoped it went away. Nope! I have no clue when I was bit by a tick. This maybe why it didnt work. I have know idea how long I could have this. I had him do a blood test a year later and it still came back positive. I go through stages when my hands hurt so bad. The fatty part of my thumb/palm is the worst. I have gone to an orthopedic she did test sent me to therapy. I had special braces made. Nothing worked. She said she can’t tell me what’s wrong just arthritis, but that shouldn’t be causing so much pain and set me on my way. Same thing with my back. I have always had depression, anxiety, and mood issues so it’s hard to tell if it is a factor. I have a horrible time sleeping. Diagnosed insomnia and taking meds with some help. Getting out of bed hurts everday and takes a minute to straighten out and move. I have been diagnosed with fibromyalgia. How ever I can tell I have points where I have alot more pain, lower energy than normal, more moody, and sleep worse. I feel like I have times when my PTLDS affects me then it goes into remission. It’s like a cycle.
Your story reflects the difficulty determining the correct diagnosis and treatment. I typically have various consultants weigh in.
An acupuncturist found a tick on my knee about a year ago (May 2018). My GP refused to test or give me the 1 day doxycycline so I went to the ER. I had no rash, tick was latched on but notvengoged. Left a scab thatvstayed on for 6 months. I have had a progressively worse problem with fatigue, bladder infections, and now muscle cramps and NECK PAin.My doctor did test for two strains eventually but no one seems to take me seriously. I’m in Maine. People say Buck it Up all the time but it’s hard to work when this tired. Any suggestions on how to get taken seriously?
Doctors demonstrated that a single 200 mg dose of doxycycline could reduce the risk of a rash. The study was stopped after 5 weeks. The study did not address whether a single 200 mg of doxycycline would prevent other problems with Lyme disease. The single dose of doxycycline may prevent a positive test. I advise my patients against a single 200 mg dose of doxycycline. I advise a second opinion to review your treatment options. I would also make sure there is not another illness.
I have been experiencing fatigue for about a year and all blood tests were fine. This June I felt arthritis like pain, and did another blood work for Lyme which came back negative (<90). The pain in my joints became unbearable and I went to a rheumatologist, she tested me for Lyme and I have 4 positive IGG bands. She said she can’t really say it’s lime, but due to my simptoms gave me Doxy for 21 days (I’m now on day 9). Another test from StonyBrook came back indetermined with now 1 IGM showing as well. I’m so worried.
I have pain in my joints and twitching on my lip, and sometimes in my tongue (very mild), also twitching in my legs and arms. They come and go.
A year and a half ago, when I had serious eye twitching and headaches and was extremely fatigued and had panic attack’s, so had an MRI done and it came back normal.
I’m so confused at what’s happening. Dr. Google scared me when I read about MS, but I had an MRI done 1.5 years ago…
I’m in my early 40’’s, and don’t even recall being bit by a tic, though there are a lot of deer where I live.
I don’t know if it’s Lyme or not, as I only showed 4 positive bands, but I’m loosing my mind trying to figure out what’s wrong with me. Cardiologist said I’m fine (went due to palpitations and afib episode), GI did endoscopy said all good.
Please help! Can Lyme cause these pains and most importantly twitching in lip, cheeks and periodic spikes in tongue? Thank you! I hope you will respond.
I typically would include a new neurologic evaluation. I would look a second time at Lyme disease if symptoms persist. Doctors are divided on how to approach Lyme disease.
Hi, I’ve been recently diagnosed with Lyme disease, but my muscles are very weak and I am still very tired, two weeks after finishing my 3 week course of antibiotics. Even though I tested positive for Lyme, I am very concerned about something more serious ALS. I had an MRI, which came back normal. I have muscle weakness, twitches, fatigue, tremors, bladder problems, brain fog, and depression. I am seeking help, because my doctor has been dragging his feet and I just need answers, so I can calm down. I already have pretty bad anxiety and I just want to make sure everything is okay, because I’m very concerned that I have ALS. Do you think it’s just the post treatment Lyme or do you think it’s something more serious? Thanks
I typically recommend working with both a neurologist and doctor experienced in treating Lyme disease. I have treated Lyme disease patients longer than 3 weeks or change antibiotics.
Hello my mom has been diagnosed with Lyme a year or two ago and right now she’s having bad muscle spasms and pain in her arm. She says it feels like her arm is being ripped off and she’s screaming and crying. We are confused on why this pain is happening. She hasn’t lifted anything heavy the last week and she sits down and rests and it continues to hurt every couple of hours for at least 30 minutes at a time. What should we do?
Go see Dr Charles Crist, Ashland Mo
I’m going on my 1st year after 4 years of treatment for Lyme Disease & Babesia, and 1 year of treatment for Bartonella and Rocky Mountain Spotted Fever. Before I got sick, I was pretty average and normal. After getting sick, and even after abx treatment, I have reoccuring panic attacks at random, but also in sync with barometric pressure changes. We discovered my MTHFR gene mutation which complicated things more. I experience tremors randomly, sludgey lymph nodes and swelling, permanent damage has been done to my left eye because I wasn’t diagnosed right away. I developed scoliosis in several parts of my spine spanning top to bottom, both front to back curvatures and side to side curvatures. My muscles are constantly tense and tight where I have to see an acupuncturist on a weekly basis for cupping therapy, acupuncture therapy, and electro therapy. Certain herbal tinctures and teas help alleviate symptoms, but things like my menstraul cycle screw me up big time, I can’t handle basic inflammation anymore. And lastly my G.I track is never going to be the same, after Gallbladder removal and Tick infections right on top of that in the following year, plus another abdominal surgery during my tick infections, I don’t think I’ll ever not feel pain in my adominal cavity again. That’s not to say I’m not better than how I was starting out, I’m 10x better than when I was first infected. I’m just never going to be the old me ever again, or “normal” ever again.
I had a tick in my leg 2 months ago
I had the rash
So they gave me antibiotics
I was not feeling well during the treatment
But as soon as I was done 3 weeks later
I got this horrible neck pain
And pressure pain in my shoulders
My neck is perma-swollen
My hands hurt
I have to wear sunglasses in the light
Or I get horrible headaches
And pain in random spots
Weird burning sensations
And the worst thing is everytime I take a step I have horrible cramps going up my legs
I still havent got any answers on anything
I am sorry to hear you are ill. I advise my patients with continued issues to return for a followup. I arrange for other specialists and to determine if additional treatment might be advisable. Call my office at 914 666 4665 if you have questions.
My 2 year old was exhibiting Covid symptoms . Tested negative and then was tested for Lyme tested negative
Was tested again with more extensive test and tested positive. He has been on antibiotics for a week with a week to go. When he goes outside to play in hot weather he complains of being cold .and wants to come in.
Also his temperament has changed .. I am concerned there might be some cognitive damage .
Symptoms of Lyme disease and COVID-19 overlap. I typically recommend followup with your doctor if the symptoms remain.
I find myself twitching when still more and constant, persistent lower back pain. No doctors take me seriously when I say it’s related to my Lyme disease. I don’t know what next step to take.
I find other symptoms are typically present at the same time that help with the diagnosis. You should consider seeing a doctor who is experienced in treating Lyme disease for an assessment. Call my office at 914 666 4665 if you have any questions.
Dr. Cameron,
After being told by my general doctor and then a neurologist that there’s nothing wrong with me I finally received help from a homeo path who treated me for Bartonella and then the Babesia and Borellia. I had been having G.I. problems and then last June I started noticing a lot of fasciculations in my calves. The day after noticing in the situations I started experiencing extreme fatigue, anxiety(which I never have) and even panic attacks.
After taking supplements in the form of vials and drops, I no longer have Bartonella, Babesia or borrelia showing up as issues anymore, but the fasciculations in my calves and the tightness in my hamstrings continues to be an issue. Is that possibly the result of nerve damage suffered because of chronic Lyme? Is there hope that it’ll eventually go away? Thank you so much for your thoughts.
I have had Lyme disease patients with fasciculations without other issues. I am not sure the cause. I have them consult a neurologist to rule out other causes.
Hi Chris , I have been diagnosed with Lyme , babesia and bartonella. I experience exactly what you are talking about. If I’m having any kind of flare it makes everything worse- energy goes down. Then I get the fasciculations in my calves after I move around each time. It takes a long time to resolve too. Do, I don’t have an answer but sure wish I did. I see Horowitz. Who is your llmd?
Bonnie, I was simply going through some different searches and happened upon this thread once again. I see you homeopath. I am done with treatments, And I’ll make appointments on an as needed basis. Usually I just stop in for some supplements. I guess I’ve learned to live with it. I would say my calves have never stopped twitching. Sometimes I can’t really tell unless I look. There are stretches that last up to a week where my legs really bother me and I constantly feel like I have to stretch. I am a little less anxious as every episode to date has gone away and then I feel 95% healthy again. I currently take magnesium, vitamin D3 and some other vitamin supplements. I think anxiety and sugar make it worse. My biggest issue, is where I feel better I start eating things I shouldn’t eat. Any changes for you??
Have you found any solution to the lingering muscle twitches?
Chris,
What did your homeopathic doctor give you? I have tested negative for borrellia but think that I have Bartonella and am going to get tested today.
Dr. Cameron,
My symptoms began with dizziness, severe brain fog, mild headaches and cranial pressure, blurred vision, and trigeminal neuralgia, and now I have daily ice pick headaches throughout my entire head as well as severe nightly (and morning) fasciculations in my feet that have rapidly spread to my calves, making sleep difficult. I also have some twitching in my right hand and paraesthesia that comes and goes in my right calf as well as occasional numb patches in the right calf and foot plus the right wrist. My calves are very tight in the morning and sometimes my entire right leg is tight, yet no amount of stretching helps. For several years, I had severe spastic cramps in my feet at night. My electrolytes are normal. I have 4 small white matter hyperintensities in the frontal and periventricular lobes. I passed my neurological exam and declined the spinal tap. My brain fog and vision issues are better now, but the other symptoms remain, with mild dizziness that comes and goes. My neurologist isn’t sure if it’s MS, and 2 ENTs said that my ears are fine. I’m going to get an EMG soon and see a neuro who specialized in MS, but I am freaking out about the fasciculations and am worried about ALS. I still lift weights (I’m a thin 45-year-old woman), and I don’t think I’ve lost strength. My symptoms began 4 months ago. I have two cats who access the outdoors, and I live in NJ, which has a Lyme disease problem. I’ve been on many oral antibiotics in the past for recurrent UTIs and a breast infection a few years back. I’ve had bladder issues for years, including frequency, retention, and, more recently, a stream that I have to force-start from time to time. I also have HSV1, which began giving me nerve pain in my face when it retreated, starting a couple of years ago. It seemed like the trigeminal neuralgia first occurred concurrently with cold sores and then started happening without it. I also had mono 20+ years ago. Otherwise, I eat organic foods and am a healthy person.
I am desperate and terrified. I’ve just scheduled an appointment with a neurologist who specializes in neurological diseases and Lyme. If you can give me any advice or direction, I will be incredibly grateful.
Christine
I meant to say that the MAJORITY of these symptoms (fasciculations, brain fog, dizziness, ice pick headaches) began 4 months ago. I am also in perimenopause and having hot flashes.
Hi there, do you know if a good lyme dr in nj? I can’t seem to find any have twitches all over as well
Hey guys, I was laughed at for wanting a Lyme disease test back in the summer, and it actually came back positive. I suffer pain all over my body in my joints, muscle twitches and spasms, chest pain, anxiety, irritability and more. I got a little better after the course of oral antibiotics, but I am still having symptoms. I am so overwhelmed. Should I get IV antibiotics? My blood pressure sky rockets randomly sometimes and I developed mitral valve regurgitation. I’m so scared and feel so alone, I don’t think the doctors understand what I’m going through. I was having symptoms since July 2020 but wasn’t diagnosed until I became my own advocate in September 2020. It’s now December and I am getting new symptoms, like pain in my face and mouth. I just wish I was treated sooner. COVID has completely swept Lyme under the rug and I don’t think it’s nearly as bad.
I have found a number of other antibiotics beyond doxycycline helpful in my Lyme disease patients. Some of them have had co-infections. I also have to look for other illnesses. Call my office at 914 666 4665 if you have any questions.
Greetings,
I found a tick embedded in my right thigh after a hike. I found it about 30 hours later and told my doctor I needed doxy for 3 weeks. I got the tick tested and it was positive for Lymes, Borrelia and Anaplasmosis. I also saw a Naturopathic doctor as well and started some supplements and herbs/ tinctures. I never really had any symptoms of the infection and I thought I was okay and was not too compliant taking what my ND prescribed. Long story short, in May 2020 I was bit, August 2020 tested positive for Lymes (still didn’t have any direct symptoms) but then November 2020, I started getting muscle twitches (fasciculations) throughout my entire body and developed eyelid myokymia. This added a lot of anxiety as I thought it was something serious. Since then, I’ve been to 2 neurologists and both have attributed the twitches to benign fasciculation syndrome and/or anxiety. The twitching does get worse some times and there are days where it’s minimal. I’m currently looking for a LLD (Lyme Literate Doctor) in the Chicago area to see if there’s something that can be done for the twitching as it gives me extreme anxiety which I think then perpetuates the stress response and it’s like a negative feedback loop where my anxiety shoots through the roof and I cannot heal. Any ideas would be greatly appreciate and I appreciate Dr. Cameron’s work on Lymes and I applaud you all for fighting this fight. I’m glad I’m not a lone and it makes me a little more at ease knowing that there is some hope.
It was important that you were evaluated by two neurologists. I typically look a second time for a tick borne infection. There are typically other symptoms or findings that will help with the diagnosis. I have also had patients with unexplained fasciculations.
I go to Dominic patawaran at I squared medical group
I tested positive for Lyme, Batronella henslae, and bartonella quintanna through Galaxy labs. My ILADS doctor also beleives I am infected with babesia and possibly erlichiosis after his physical exam. After seeing multiple neurologists (6) for muscle twicthing and atrophy, and receiving multiple EMG’s I decided to see an ILADS doctor. I have been receiving antibiotic treatment since August and feel no better. We have tried different combinations of valtrex, doxy, flagyl, zithromax, hydrochorl., ivermectin, and autovoquone at different pulses throughout the process. I feel weaker and in more pain than I ever have, and my atrophy and twitching has become more widespread and severe. Just recently my lyme doctor told me he was at a loss for what could be wrong. I recently had another appointment with a neurologist who did not find “anything alarming” in my exam, but scheduled me for another EMG. During the visit the neurologist expressed their lack of belief in Lyme and it’s co-infections. I am lost, scared, and not sure where to turn. Any suggestions?
I have patients where they remain ill despite antibiotic treatment who have not found a neurologist helpful. There are a few treatment options I use for my patient such as oral cefuroxime and IV Ceftriaxone. I have not been in favor of pulse therapy. I have patients in my practice who have failed treatment who have also not found neurology helpful.
Hello, I’m fighting Lyme too for the 3rd time with doxycycline. I finished the antibiotics last month and still have all the symptoms. I eat clean. I am taking shakes, vegetables, fruits, vitamins B, D, and liquid. I exercise my knees and my neck to relieve the pain. I am scheduled to see a Rheumatologist, an Infectious disease doctor who treats Lyme disease. There are no openings until 08/17 and 08/18.
I do not get anxious. I lift up myself and think positive. I live alone. I am 63. No disease is going to take me down. I had a hip replacement last year and now I need a knee replacement. My symptoms are scarring and annoying. I never give up. The doctors told me my physical is great! On 3 occasions I had to asked for Lyme disease test. Then they do it.
Otherwise they don’t. Please tell your friends and family to do Lyme tests every 6 months at least,
Drink lots of water and detox your body with veggie shakes We will get better. Holistic to treat Lyme does not accept any insurance.
Love you, God Bless you
Thanks for adding your comments.
Can you be tested again after 8 years … I was told I had Lyme and reg dr gave me antibiotics and basically acted as no big deal. A few years later was diagnosed with fibromyalgia… told dr I had Lyme before asked are sure it is fibromyalgia…got dismissed I am now 46 and a lot of pain, memory trouble, etc… how do I go about finding any one to retest me. Would it show up . I live in NC and I am just frustrated.
I advise my patients to look a second time at Lyme disease when being evaluated for Fibromyalgia. I have had patients who responded the antibiotics years after their initial antibiotic treatment.
Doctor, is this combination of two AB together : cefuroxime + IV Ceftriaxone ?
Or you use one of them ? Thank you.
Seems i have PTLDS with continue of muscle twitching in all body.
Cefuroxime (Ceftin) is the same family as IV ceftriaxone (Rocephin). I don’t use two drug in the same family at the same time.
Hey JP, I’m in a similar situation very similar symtoms. No atrophy yet though. I’m pursuing lyme at this point since my EMG came back negative. Doctors so far gave me nondiagnostic. Been struggling with this for years. My lyme tests came back negative but going to a lyme specialist and going to run western blot. If your convinced it lyme causing your issues I would try ahcc, japanese knotweed, cats claw. Theses have all been per reviewed to combat lyme and many have had good results taking these. There’s some pre-made formulas on Amazon that have these and some other ingredients that have proven to be effective towards lyme. Worth checking out. I’m starting some of these but ahcc gave me insomnia so I had to stop. Do your own research on these but worth a look into.
I went 12 years undiagnosed. Finally a Functional holistic doc diagnosed me with chronic lyme. I went to a LLMD and was treated with antibiotics and supplements, antimicrobials for 18 months. I continue to suffer with lethargy, unlivable fatigue. I am now told it is Fibromyalgia. I am taking supplements, gabapentin and Cymbalta. Nothing seems to help and I have no quality of life.
If you tested Lyme positive 30 years ago and successfully underwent antibiotic treatment( meaning the symptoms abated) and now test negative despite having PTLDS symptoms does that rule it out? My husband is 70 now and has been suffering with increasing joint pain, tingling, depression, terrible fatigue and migraines for years. His doctor is diligently testing him and is concerned. He has ruled out rheumatism, diabetes, and keeps coming back to osteo-arthritis. His Lyme titers are always negative. But I keep asking how can we be sure it’s not the old 1983 case of Lyme coming back to haunt? (We actually lived within 100 miles of Lyme back when he caught it.)
The tests for tick borne illnesses are not as reliable as I would like. The tests can become negative following antibiotic treatment. I have treated patients for tick borne illnesses based on clinical judgment if the tests are negative. I have also had to evaluate for other illnesses as you have done. All the best