Which advice would you give to someone who has just been diagnosed with Lyme Disease?

See some advice from people with experience in Lyme Disease to people who have just been diagnosed with Lyme Disease

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.

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.

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.

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

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

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.

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