Short answer · Medically reviewed summary · Last updated: 2026-04-06
The most important step upon receiving a diagnosis of Lyme Disease is to initiate appropriate antibiotic therapy as prescribed by your physician to prevent the infection from progressing to more severe, disseminated stages. Building Your Care Team Navigating Lyme Disease can be complex, so it is essential to build a team that includes a primary care provider, an infectious disease specialist, and if needed, a neurologist or rheumatologist. Ensure your providers are willing to listen to your specific symptom progression and are up-to-date with current guidelines from organizations like the CDC or ILADS. Managing Daily Life and Energy Living with Lyme Disease requires radical self-compassion, as the fatigue and neurological symptoms can be debilitating.
36 people with Lyme Disease have shared their first-person experience on this question at DiseaseMaps.
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Which advice would you give to someone who has just been diagnosed with Lyme Disease?
Advice for the newly diagnosed with Lyme Disease, written by people who have lived it. What they wish they had known on day one.
The most important step upon receiving a diagnosis of Lyme Disease is to initiate appropriate antibiotic therapy as prescribed by your physician to prevent the infection from progressing to more severe, disseminated stages.
Building Your Care Team
Navigating Lyme Disease can be complex, so it is essential to build a team that includes a primary care provider, an infectious disease specialist, and if needed, a neurologist or rheumatologist. Ensure your providers are willing to listen to your specific symptom progression and are up-to-date with current guidelines from organizations like the CDC or ILADS.
Managing Daily Life and Energy
Living with Lyme Disease requires radical self-compassion, as the fatigue and neurological symptoms can be debilitating. Prioritize "pacing"—balancing activity with intentional rest—to avoid post-exertional malaise. Document your symptoms daily in a journal to identify triggers and track your response to treatments, which helps your medical team make informed adjustments.
Finding Support and Navigating Systems
You are not alone; connecting with the 4,207 members of the Lyme Disease community on platforms like DiseaseMaps.org provides vital emotional support and shared wisdom. When navigating the healthcare system, keep a binder of all medical records, lab results, and medication logs. For those facing financial barriers, organizations like the Lyme Disease Association offer resources on patient assistance programs and clinical trial information.
Advice for Families
Caregivers play a critical role in the recovery process for those with Lyme Disease. Focus on being a steady presence, helping with logistical tasks to reduce the patient's cognitive load, and encouraging them to attend support groups where they can feel understood by peers who share similar challenges.
Staying Informed
To stay updated on emerging research, regularly check the NIH’s Genetic and Rare Diseases Information Center (GARD) and PubMed for peer-reviewed studies. Be wary of "miracle cures" advertised online; always verify new treatment protocols through your primary care physician before making changes.
Medical Disclaimer: This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
References
- NIH Genetic and Rare Diseases Information Center (GARD)
- Centers for Disease Control and Prevention (CDC) - Lyme Disease
- Lyme Disease Association (LDA)
Author: DiseaseMaps Editorial Team
Reviewed against authoritative medical sources (NIH GARD, Orphanet, OMIM)
Last updated: 2026-04-06
Sources cited: NIH Genetic and Rare Diseases Information Center (GARD) · Centers for Disease Control and Prevention (CDC) - Lyme Disease · Lyme Disease Association (LDA) · PubMed · WHO
Medical disclaimer:
This information does not substitute professional medical advice. Always consult your doctor before making health decisions.
Source:
DiseaseMaps.org
Seek out a physician referral such as ILADS and find a doctor that knows HOW to help you. DO NOT rely on just any doctor. Lyme Disease knowledge is in its infancy and most doctors don't TRUELY know much about it. Even infectious disease doctors who are not ILADS doctors will most likely be dismissive or may order you the standard few weeks worth of Doxycycline. You need a doctor who can follow up with you. It could become chronic like mine, if not treated long enough. Unfortunately Lyme Disease doctors usually get paid by you and not your insurance. Until the laws are changed, it will remain an expensive illness to treat.
Posted Feb 26, 2017 by Suzy 850
If it's within the first month....you'll be OK. ... any time after that look after your immune system, this is key to recovery
Posted May 9, 2017 by Lynn 1000
DO NOT look to your regular doctor for help. It is a waste of time. Mainstream medicine has nothing to offer us.
Go to an advocate for information and help. Websites like Tired Of Lyme are hugely helpful.
Buy Steven Bruhner's book "Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections" and read it more than once.
Buy and read "Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease " by
Richard Horowitz
Join Dr. Thomas Grier's facebook page and read anything he has written. He comments on an excellent microbiology report on Lyme, although old, tells you exactly how Lyme bacteria works. I tell everyone to read it.
Build a team for support. People that are positive and will not tell you all is lost. Doing this alone is not an option.
It is crucial to understand how lyme works, how testing is flawed, and the ins and outs of this complex disease before you decide how to begin treatment.
Go to an advocate for information and help. Websites like Tired Of Lyme are hugely helpful.
Buy Steven Bruhner's book "Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections" and read it more than once.
Buy and read "Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease " by
Richard Horowitz
Join Dr. Thomas Grier's facebook page and read anything he has written. He comments on an excellent microbiology report on Lyme, although old, tells you exactly how Lyme bacteria works. I tell everyone to read it.
Build a team for support. People that are positive and will not tell you all is lost. Doing this alone is not an option.
It is crucial to understand how lyme works, how testing is flawed, and the ins and outs of this complex disease before you decide how to begin treatment.
Posted May 11, 2017 by Susan 1270
Unfortunately due to lack of knowledge with most doctors. I would recommend if it's not an early infection to find one that can treat Lyme/specialises in it. I would pass them burrascano or international guidelines on treating it.
Direct them towards testing centres if they needed it. However first and foremost feeling your not alone in this is perhaps the most important to find someone that's been exactly in the same position.
Direct them towards testing centres if they needed it. However first and foremost feeling your not alone in this is perhaps the most important to find someone that's been exactly in the same position.
Posted May 12, 2017 by Lorraine 1001
Read a lot about the disease, so that you understand your body and can tell people about your disease when they ask. Maybe you can help yourself when you read a lot about it. Another advice is search for a good Lyme doctor (ILADS) or a good therapist for Lyme disease (ask other patiënts, so that you can trust that therapist).
A good doctor help me, but also a new lifestyle. When you get sick, you had the wrong lifestyle... when you had a good lifestyle, you didn't get sick (immunsystem is in the gut).
So search which food is good for you or not (food intolerance, allergy tests), eat healthy, stop smoking, don't take (a lot of) alcohol, have (a little) exercise every day (walk in nature) and talk with friends/family (if it is possible), the things that give you stress, put it away (if that is possible), Investigate whether you can fight radiation (if you can't, Reduce internet / phone) etc.
A good doctor help me, but also a new lifestyle. When you get sick, you had the wrong lifestyle... when you had a good lifestyle, you didn't get sick (immunsystem is in the gut).
So search which food is good for you or not (food intolerance, allergy tests), eat healthy, stop smoking, don't take (a lot of) alcohol, have (a little) exercise every day (walk in nature) and talk with friends/family (if it is possible), the things that give you stress, put it away (if that is possible), Investigate whether you can fight radiation (if you can't, Reduce internet / phone) etc.
Posted Jul 19, 2017 by A 800
Learn as much as you can. Read, watch videos, talk to patients who have it. Research as much as possible. Also, join the Facebook support groups that are out there. They're very helpful.
Posted Aug 16, 2017 by Deanna 2150
Find a Lyme literate doctor, get the diagnosis but educate yourself. Western medicine is not curing anyone of this disease, it's making people feel worse. If you take anything and it makes you feel worse, stop taking it. Listen to your body.
Posted Aug 29, 2017 by missy 2050
Educate yourself (and not just by asking a generic doctor or health care practitioner). Join online groups and forums; learn from others that have been there / are there. Don't waste your time on Infectious Disease "specialists" or other practitioners that are not Lyme-savvy. Keep a detailed journal of your symptoms including dates, duration, severity and recurrence. Know that this is a trial-and-error disorder. Be willing to try more than one thing, knowing that some will not work for you at that time (but could work at another time). Never give up, don't lose hope.
Posted Aug 30, 2017 by S. Guthrie 2000
Take notes when you go to Dr. Detox, detox, detox
Posted Aug 31, 2017 by Susan 800
I believe full body hyperthermia us the closest treatment we have to cure. This treatment was begun in Germany and care must be taken to avoid treatments that claim to achieve the same goals but do not. This treatment may not be right for everyone, but regardless, it is imperative to find a Lyme literate practitioner, medical or naturopathic. Support of loved ones or Kyme groups will help so much as you find your personal journey through this disease.
Posted Sep 12, 2017 by Sheri 1100
Find a Lyme literate doctor, research their beliefs about illness and treatment, ask other people if they know anything about the practice and if feeling like it would be a good place to go for treatment make an appointment and see what their plan for your treatment would be and wether it matches what people who have progressed in treatment have told you worked for them. Look for a practice that has a variety of treatments that match your stage of illness; if you were just infected short term oral meds with regular check ins with the Doctor might be appropriate but if you have chronic long term infection with later stage symptoms than a more intensive holistic treatment with IV meds, supplements and alternative treatments like physical therapy, acupuncture and hyperbaric oxygen would be expected for the best outcome. After starting treatment be patient with yourself, follow all of the treatment guidelines and seek out people who are willing to learn about your illness and accept your diagnosis so you can have the support you need to be successful and get better.
Posted Sep 15, 2017 by Marty 300
the best advise given to me was it is a marathon not a race and you are a turtle... the finish line will not move it just will take you a while to get there
Posted Sep 29, 2017 by Sarah 2550
Don't get to hung on convincing anyone you have Lyme it's not important Read research connect
Listen to your gut NO ONE HAS YOUR CURE you do. Try the less heroic treatments first unless your really sick but you can always move onto drugs and antibiotics There is so much in the Hetbal and supplement diet and lifestyle that can heal
It's never a quick fix so appreciate progress and good days eventually there will be a lot more and remission
Listen to your gut NO ONE HAS YOUR CURE you do. Try the less heroic treatments first unless your really sick but you can always move onto drugs and antibiotics There is so much in the Hetbal and supplement diet and lifestyle that can heal
It's never a quick fix so appreciate progress and good days eventually there will be a lot more and remission
Posted Sep 29, 2017 by Katrina 2000
Make dietary, cleaning and personal care changes. The more toxins removed from our environment the better.
Posted Oct 1, 2017 by Sonya 2000
Read dr. Horowitz book, How Can I get better!
Posted Oct 9, 2017 by Jessie 1600
Do lots of research, find an llmd as soon as possible, get away from mold and other toxins, detox and more detox vitamins and diet changes.
Posted Oct 25, 2017 by Andrea 2120
I’d first make sure they had a Lyme literate doctor. I do referrals. I’d give them my free website so they not only have resources in several countries, I also have Lyme maps, natural protocols for those who can’t afford a doctor, and books chosen by the Lyme community.
http://lymeandcoinfectionsworldwide.simpl.com
http://lymeandcoinfectionsworldwide.simpl.com
Posted Mar 9, 2018 by Niki 8100
Check all your options for doctors, get a gofundme account because it’s expensive and insurance isn’t covered by 98% of the doctors. Next learn about the herxheimer reaction and stock up on bio freeze for pain, a heating pad, a tens unit, Alka Seltzer Gold, Benedryl, Braggs Apple Cider Vinger, Epsom Slat, a diffuser and essential oils, Sovereign Silver Colloidal Silver, and Oregan Oil. Then hold on. It’s a rough ride, but worth it
Posted Mar 14, 2018 by Nikolettie 2700
When you are ready to talk I am here
Posted May 26, 2018 by Bethany Wing 2100
Get with an experienced practitioner and work the planned treatment.
Learn as much as you can without driving yourself crazy. There are lots of great FB groups to share information, but unfortunately, there are people who give misinformation and make it harder to decipher the truths.
Learn as much as you can without driving yourself crazy. There are lots of great FB groups to share information, but unfortunately, there are people who give misinformation and make it harder to decipher the truths.
Posted Feb 1, 2020 by Lori 2550
That it be put in the hands of a Lyme specialist doctor, with patient associations and that he does the correct analysis because it is very important to treat yourself at the beginning of the infection
Posted Dec 16, 2021 by José 7770
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Do not be afraid, that you modify your diet, vitamine, do not give up.
Posted Feb 26, 2017 by Achita 1050
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It is a struggle hard, but if you're already in the correct diagnosis, it is only not to stop the treatment.
Looking for support groups in social networks and in your community.
Learn from others and to support each other.
Learn from your syndrome, educate yourself, the better you assemble to combat this syndrome is knowledge.
Find out
Looking for support groups in social networks and in your community.
Learn from others and to support each other.
Learn from your syndrome, educate yourself, the better you assemble to combat this syndrome is knowledge.
Find out
Posted Feb 28, 2017 by Leva Méndez 3122
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contact a trained physician
Posted Mar 6, 2017 by laurence 1000
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That is put in the best of hands . If the infection is acute because it does not have to be any problem , any internist will give you antibiotics . If you already months have passed since the tick bite, the disease becomes chronic , in these cases should go to a specialist for lyme . There are not many in Spain but there are . In the islands there is none, although if well informed doctors .
Posted Mar 23, 2017 by Fátima Marrero campos 1264
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Looking for a good specialized physician with years of experience in Lyme disease and in whom you can confide in your life.
I know that depending on where you live and the money you have, it's going to be very difficult, but if you can do it.
On the other hand don't stop your life to heal you, you may pass enough time. Make psychological therapy that will help you understand the changes.
I know that depending on where you live and the money you have, it's going to be very difficult, but if you can do it.
On the other hand don't stop your life to heal you, you may pass enough time. Make psychological therapy that will help you understand the changes.
Posted Aug 25, 2017 by Cecilia 2263
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Not to be discouraged, there are other people with the disease that can help and others who claim to have cured. Science tries to provide them with the vaccine and the treatment is great and I'm sure that with a proper diet and a support psycológico be cope in better way.
Posted Sep 12, 2017 by N6 2550
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Don't despair everyone feels in different ways, this taken on time can have a recovery in the good, be positive and do the treatment it IS essential THAT THE FAMILY UNDERSTAND WHAT PASSES UNDERSTANDING IS WHAT IS NEEDED
Posted Sep 13, 2017 by mora de La Plata 1500
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that does not decay, is the start of the fight. to take forces. do everything that you tell the doctor, endure the herx. never stay quiet or leave. sooner or later you will feel the improvements, is not invincible the lyme.
Posted Sep 15, 2017 by Emiliano Ignacio Rodriguez 2500
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Before taking the medications, do more tests and ask for more advice from other doctors
For a clear diagnosis and a treatment tangent
For a clear diagnosis and a treatment tangent
Posted Sep 27, 2017 by Amparochiqui 2000
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In France, please contact the association "The Right To Heal" and get in touch with a physician in the group "Chronimed"
Posted Sep 29, 2017 by Julien 100
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stay very vigilant to the symptoms .. get in touch with a SPECIALIST OF LYME DISEASE
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If the tick bite is recent, immediately take 10 days of antibiotics, and at the same time treat the causes : a radical change of life style, leave the habits toxic (stop smoking, drinking, getting into intense emotional states, ), achieve the life of their dreams and take really good care of yourself.
Posted Oct 1, 2017 by Marie-Pierre 1000
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Act as soon as possible for treatment during the term and a chance of healing more safe.
A doctor trained and a counselling and nutritionel
Followed holistic custom
A doctor trained and a counselling and nutritionel
Followed holistic custom
Posted Oct 1, 2017 by Linda 1000
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Listen, trust and confidence. Take the road to healing-by-step to accept that it's going to take time (money and frustration), because what works for one is not valid for the other. Look, remained curious, surround yourself with people with whom you can share the effects of the disease (association, social networks and groups, etc.). Document, read, go to seminars, conferences as this is where you know where to find refuge and share his experience.
I would not believe the doctors who do not know anything about it to me, and I advised her to go into psychiatry, I have lost 4 years that have allowed Lyme to me colonize...
I would not believe the doctors who do not know anything about it to me, and I advised her to go into psychiatry, I have lost 4 years that have allowed Lyme to me colonize...
Posted Oct 2, 2017 by Aurore 1000
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To learn patience, to take things as they come, be strong, be courageous and above all never forget that life is made of tests, and that we will win against it....
Life is beautiful if one takes the time to watch it
Life is beautiful if one takes the time to watch it
Posted Oct 2, 2017 by Yas 1000
