Month: January 2024

Could It Be Lyme And/Or Other Tick-Borne Diseases?

For those of us that have been dealing with Lyme and Tick-Borne Diseases (TBDs) for a long time, we usually see similarities in others all the time. Whether their symptoms are TBD related, or not, is sometimes hard to determine because of all the symptom overlaps. As well, present testing for TBDs is not 100% accurate and can result in false negatives. In this regard, I thought I would post a few diagnoses and symptoms that can be TBD related, with some research/info for people to read, if interested.

TBDs have been around for a VERY long time now and could very well be a direct cause of a lot of present day things. The Lyme bacteria, Borrelia burgdorferi (Bb), was found in Otzi the Iceman (“U of T researchers find that ancient Iceman’s infection helps Lyme disease bone loss discovery” - https://www.utoronto.ca/news/u-t-researchers-find-ancient-iceman-s-infection-helps-lyme-disease-bone-loss-discovery#:~:text=Named%20after%20the%20%C3%96tzal%20Alps,resided%20deep%20in%20%C3%96tzi’s%20bones.) and in Amber (“Amber discovery indicates Lyme disease is older than human race” – https://today.oregonstate.edu/archives/2014/may/amber-discovery-indicates-lyme-disease-older-human-race).

If you are dealing with one, or more, of the following issues, and they vary from day to day (which is common in TBDs), you may want to do some further research on whether TBDs could be the root cause.

DIGESTIVE ISSUES – TBDs can cause a lot of digestive issues – “The many manifestations of a single disease: neuroborreliosis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7850350/; “The Spectrum Of Gastrointestinal Manifestations In Lyme Disease” –https://journals.lww.com/jpgn/fulltext/1999/10000/the_spectrum_of_gastrointestinal_manifestations_in.50.aspx; and “Gastrointestinal and Hepatic Manifestations of Tickborne Diseases in the United States” – https://academic.oup.com/cid/article/34/9/1206/462641l_manifestations_in.50.aspx; “Lyme disease, a Root Cause of Inflammatory Bowel Disease: A Case Report of Successful Treatment and Remission” – https://www.elliotdinetz.com/post/the-borrelia-species-is-recognized-to-cause-a-myriad-of-non-specific-symptoms-among-lyme-patients-it-has-also-been-documented-in-the-literature-to-have-the-ability-to-incite-autoimmune-responses.

MENTAL HEALTH ISSUES – a number of mental health issues have now been recognized as potentially having TBDs as a root cause. Here is just a bit of info – “Unraveling the mystery of Lyme disease” – https://www.apa.org/monitor/2022/06/feature-lyme-disease; “Lyme Disease Heightens Risk of Mental Disorders, Suicidality” –https://www.columbiapsychiatry.org/news/lyme-disease-heightens-risk-mental-disorders-suicidality; “Lyme Borreliosis and Associations With Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study” –https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2021.20091347. Dr. Brian Fallon is one of the foremost doctors on this topic and speaks about the issue openly.

FACIAL/BELL’S PALSY – Although Bell’s Palsy can be caused by other issues, it can be a fairly frequent symptom of Lyme disease – “Characteristics and outcome of facial nerve palsy from Lyme neuroborreliosis in the United States” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8791801/; “Lyme Disease and Facial Paralysis” – https://www.facialparalysisinstitute.com/conditions/lyme-disease/#:~:text=In%20certain%20cases%2C%20Lyme%20disease,Swollen%20lymph%20nodes.

OTHER NEUROLOGICAL ISSUES – Although Facial Paralysis/Bell’s Palsy is one of the more common neurological issues that can be caused by the Lyme bacteria, other issues are also possible – “Lyme Neuroborreliosis: Mechanisms of B. burgdorferi Infection of the Nervous System” – https://www.mdpi.com/2076-3425/11/6/789; “Common Neurologic Features of Lyme Disease That May Present to a Rheumatologist” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10146759/.

HEART ISSUES – Lyme carditis is getting much more common than it was in the past, or perhaps it’s just being diagnosed correctly more now. Dr. Adrian Baranchuk in Kingston, Ontario, is one of the best known for his knowledge on Lyme carditis. He has written papers, a book, and speaks frequently on the issue. Here is just a bit of the information available – “GLA Podcast: Interview With Leading Expert on Lyme Carditis, Dr. Adrian Baranchuk” – https://www.globallymealliance.org/blog/interview-with-leading-expert-on-lyme-carditis-dr.-adrian-baranchuk; “Diagnosis and Treatment of Lyme Carditis: JACC Review Topic of the Week” – https://www.sciencedirect.com/science/article/pii/S0735109718394427?via%3Dihub; “Lyme carditis and atrioventricular block” – https://www.cmaj.ca/content/190/20/E622.full; “Fatal Lyme carditis presenting as fluctuating high-grade atrioventricular block” –https://www.cmaj.ca/content/192/21/E574%20; “Looking at Lyme carditis with Dr. Adrian Baranchuk” – https://www.lookingatlyme.ca/2021/10/41-looking-at-lyme-carditis-with-dr-adrian-baranchuk/.

JOINT ISSUES – Lyme arthritis can be misdiagnosed as Juvenile arthritis, and more. Lots of information available, but a lot of it is older. More research and information is needed. Here is a small sample of what is available – “The Importance of Differentiating Oligoarticular Juvenile Idiopathic Arthritis From Lyme Arthritis in Pediatric Patients” –https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9856232/; “Treatment of Lyme Arthritis” – https://www.jrheum.org/content/46/8/871 (it is interesting to note that this was written in 2019 and there were still many unanswered questions regarding treatment); “Clinical characteristics, treatment and outcome of children with Lyme arthritis in Nova Scotia” –https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4614091/ (it is interesting, and unfortunate, to note that at least one of the misdiagnosed children has since had a knee replacement in their teens).

EYE ISSUES – “Did you know that Lyme disease can affect your eyes?” – https://www.hopkinslyme.org/lyme-disease-awareness/did-you-know-that-lyme-disease-can-affect-your-eyes/; “Ocular Involvement in Lyme Disease” – https://www.aao.org/education/current-insight/ocular-involvement-in-lyme-disease

DENTAL ISSUES – “Why dental professionals should know about the signs and symptoms of Lyme disease” – https://www.dal.ca/news/2021/02/19/-why-dental-professionals-should-know-about-the-signs-and-sympto.html; “Orofacial Manifestations of Lyme Disease: A systematic review” – https://jdh.adha.org/content/95/4/23.

HEARING ISSUES – “Study finds hearing loss and Tinnitus common in patients with Tick-Borne Diseases” – https://danielcameronmd.com/study-finds-hearing-loss-tinnitus-common-patients-lyme-disease/; “Association between Sudden Sensorineural Hearing Loss and Lyme Disease” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7962810/.

BLADDER ISSUES – “Urinary Dysfunction in Lyme Disease” – https://www.sciencedirect.com/science/article/abs/pii/S002253471735989X#:~:text=We%20observed%20that%20the%20urinary,spirochete%20was%20documented%20on%20biopsy; “Lyme Disease and Interstitial Cystitis” – https://www.ic-network.com/lyme-disease-interstitial-cystitis/.

So many symptoms can be attributed to TBDs that it is impossible to mention them all here. With all the overlap with other possible illnesses one can see how difficult it is to determine whether you are dealing with TBDs or something else entirely, or both. Remember, a negative Lyme test does not mean you do not have Lyme and/or other TBDs. Only you know your body and how it is feeling. While doctors tend to diagnose based upon objective symptoms, TBDs can cause a huge assortment of subjective symptoms. With limited time available to discuss an assortment of symptoms, it can be almost impossible to obtain a correct diagnosis. Since early treatment is key, we need to trust ourselves. As a helpful tool for medical professionals, Dr. Brian Fallon, and others, prepared an excellent diagnostic tool. The General Symptom Questionnaire-30 (GSQ-30) – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6908481/. If your doctor is open to the topic of Lyme, let them know about this tool.

I’m going to also dive into a few things, with similar symptoms, that could be as a direct result of TBD’s and/or a misdiagnosis. There are many more.

FIBROMYALGIA – Could Fibromyalgia actually be TBDs? When you look at the symptom lists on the CDC website for both Fibromyalgia and Lyme Disease, the similarities are quite substantial – https://www.cdc.gov/arthritis/types/fibromyalgia.htm and https://www.cdc.gov/ticks/tickbornediseases/lyme.html#:~:text=Signs%20and%20Symptoms&text=Fever%2C%20chills%2C%20malaise%2C%20fatigue,Lymphadenopathy. Better testing would help resolve this question.

ME/CFS – “Could ME/CFS be caused by undiagnosed Lyme disease or other bacterial infections?” – https://www.meresearch.org.uk/could-me-cfs-be-caused-by-undiagnosed-lyme-disease-or-other-bacterial-infections/; “Posttreatment Lyme disease syndrome and myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review and comparison of pathogenesis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10497844/; “Is There A Link Between Lyme Disease and Chronic Fatigue Syndrome?” –https://www.contagionlive.com/view/is-there-a-link-between-lyme-disease-and-chronic-fatigue-syndrome.

MS – It is interesting to note that Lyme disease is one of the conditions to rule out prior to a diagnosis of MS, yet there is no definitive test for Lyme – “Lyme Disease Versus Multiple Sclerosis” – https://www.nationalmssociety.org/Symptoms-Diagnosis/Other-Conditions-to-Rule-Out/Lyme-Disease#:~:text=Difference%20in%20the%20causes%20of,result%20of%20a%20tick%20bite; ’Lyme Disease or Multiple Sclerosis? Two cases with overlapping features.” –https://jicna.org/index.php/journal/article/view/jicna-2018-112. At one time an MS diagnosis was an MS diagnosis. Now, there are several different syndromes – “Types of Multiple Sclerosis” – https://www.nationalmssociety.org/What-is-MS/Types-of-MS#:~:text=Four%20disease%20courses%20have%20been,secondary%20progressive%20MS%20(SPMS). Perhaps this is because some are actually TBDs. More research is required.

SARCOIDOSIS – Apparently, the exact cause of sarcoidosis is unknown. A type of autoimmune disease? Could Borrelia burgdorferi be a trigger? Here is some reading: “Systemic Sarcoidosis Associated with Exposure to Borrelia burgdorferi in a 21-Year-Old Man” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6346892/; “Concomitant Lyme Disease and Sarcoidosis in a Patient With Advanced Degree Heart Block” – https://www.jacc.org/doi/10.1016/S0735-1097%2822%2903439-8#cestitle40; “Treating Left Ventricular Hypertrophy With Antibiotics:Disseminated Lyme Disease as a Sarcoidosis Mimic” – https://www.jacc.org/doi/10.1016/S0735-1097%2823%2902950-9; “Lingering Questions About Lyme Disease” – https://sarcoidosisnews.com/columns/lyme-disease-connection-questions/.

THYROID DISEASE(S) – As someone that was diagnosed with Hypothyroidism back in 2020, with no resolve of symptoms although having been prescribed Synthroid, I do believe that my symptoms could be attributable to Lyme and/or TBD’s. We will probably never know at this point. Here is some reading on the issue: “Coexisting Thyroiditis and Carditis in a Patient With Lyme Disease: Looking for a Unifying Diagnosis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9363512/; “It’s Tricky-How to Diagnose & Treat Low Thyroid” – https://www.treatlyme.net/guide/hypothyroidism-lyme-disease. There is a lot more but it’s mostly by doctors that treat. Worth investigating if you have been diagnosed with a thyroid disorder and medication isn’t helping with symptoms.

LICHEN SCLEROSUS – yet another diagnosis with unknown etiology. Here is some info: “Possible Role of Borrelia burgdorferi Sensu Lato Infection in Lichen Sclerosus” – https://jamanetwork.com/journals/jamadermatology/fullarticle/419698; “Lichen sclerosus et atrophicans, scleroderma en coup de sabre and Lyme borreliosis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4211521/; “Link between Lichen Sclerosus and Borrelia burgdorferi infection” – https://www.bmj.com/rapid-response/2011/11/02/link-between-lichen-sclerosus-and-borrelia-burgdorferi-infection. There are also articles suggesting that there is no correlation so it’s worth reading more than what’s noted above.

As you can see, Lyme is not always just a rash and flu-like symptoms. Many cases are not diagnosed until the Late Disseminated stage, if diagnosed at all. There are a number of reasons why many people do not get diagnosed and treated appropriately. I won’t go into them all here but have touched on many in past blog posts. I have also touched on some of the above in past posts as well; however, I thought it was a good time to pull this information together.

Doctors are not infallible. Many know a little about a lot, but most do not know everything about anything. With TBDs, new information is coming out on a daily basis and can frequently contradict earlier research. Just because your doctor(s) say something, it may not necessarily be correct. Remember that.

What Is It Going To Take For Meaningful Change?

When you think about the tainted blood scandal in Canada the name Janet Conners quickly springs to mind (https://www.cbc.ca/news/canada/nova-scotia/aids-advocate-janet-conners-remembered-as-a-voice-impossible-to-ignore-1.6558941). When you think about HIV/AIDS activism in the US, you think about the AIDS Coalition to Unleash Power (ACT UP) (https://www.npr.org/2021/06/16/1007361916/act-up-a-history-of-aids-hiv-activism).

There are many similarities between the tainted blood scandal activism, the AIDS activism, and Lyme & Tick-Borne disease activism. You just have to read “How AIDS Activists Fought for Patients’ Rights” – https://www.history.com/news/act-up-aids-patient-rights to see some similarities. However, there are many differences as well. Unfortunately, although there are many Lyme Non-Profits; Lyme Support Groups; researchers; and more, there isn’t a cohesive group, or a person, that is known worldwide working on getting the masses together for protests and large scale events. Don’t get me wrong, there are many, many, people doing what they can but, for the most part, they are working either by themselves or with a small group. Larger organizations are doing amazing things undertaking research, holding conferences, etc., but we still have so much to do to get to a point where everyone is taking Tick-Borne diseases (TBDs) seriously and that those dealing with the effects of a tick bite receive the diagnosis and treatment that they require.

Frequently, when events are organized to raise awareness around the world, including in Nova Scotia, usually only small groups of people attend, if any at all. Organizers, such as myself, hear a number of reasons for the lack of attendance. Things like the time of day; the distance to travel; and that they are too sick to travel, are common to hear. However, I think the main reason, for many anyway, is that they are worried that if they speak up, or are seen out in public at a protest or gathering, any mainstream medical treatment that they might be receiving will be stopped and/or any future treatment required will not be provided as they are seen as causing trouble. These are all valid reasons.

To bypass these reasons we need more people involved that are not dealing with TBDs themselves. Those with family, friends, etc., dealing with TBDs, or even those that don’t know anyone presently dealing with TBDs, but are concerned about the ever increasing risk. The more “healthy” people involved, the better. The more people involved that are in health care and research would be amazing. How do we gather the troops?

When the powers that be actually start looking at the costs associated with no diagnosis, misdiagnosis, or under treatment, of TBDs, they will realize that the savings would be significant if ALL health care practitioners were adequately trained in ALL TBDs. Even better would be a clinic dedicated to TBDs such as the one we asked the provincial government for in 2022. In Nova Scotia, we have a high rate of a number of things that could be as a direct result of being the province with the highest rate of Lyme in the country, such as knee and hip replacements. We also have a very high rate of MS which can have similar symptoms as Late Disseminated Lyme. Not that long ago, when you were diagnosed with MS, it was just MS. Now there are different syndromes or disease courses – clinically isolated syndrome, relapsing-remitting MS, primary progressive MS and secondary progressive MS (https://www.nationalmssociety.org/What-is-MS/Types-of-MS). It is also interesting to note that Lyme is supposed to be one of the things to rule out prior to an MS diagnosis, yet there is no definitive, 100% accurate, test for Lyme. Nova Scotia also has fairly high rates of dementia, mental health issues, Fibromyalgia, Chronic Fatigue Syndrome, ALS, and more. Why? Could the bacteria and viruses being transmitted by ticks be causing many of our issues?

The Nova Scotia government announced in December a new clinic implementing innovative approaches for diagnosing and monitoring inflammatory Bowel Disease. The announcement mentioned that “Inflammatory Bowel Disease (IBD) is a growing concern in Nova Scotia, with one in every 80 people, or 1.25 per cent of the population, affected by the chronic conditions of Crohn’s disease or ulcerative colitis. It is interesting to note that cases of Inflammatory Bowel Disease might actually be significantly reduced in Nova Scotia if TBDs were diagnosed and effectively treated on a more timely basis – “Borrelia Burgdorferi, a Root Cause of Inflammatory Bowel Disease: A Case Report of Successful Treatment and Remission” – https://pubmed.ncbi.nlm.nih.gov/37392196/.

I have mentioned this in the past but I was told many years ago by the head of the College of Physicians and Surgeons that it generally takes 20 years for research to filter down to the actual health care providers. The research and information that has been undertaken over the last twenty years on TBDs is amazing but only those directly affected by the issue seem to be aware of all the new advancements. Trying to get this information to the necessary people is problematic. Trying to get this information to people, and have them read it, is pretty much impossible. Our Chief Public Health Officer has told me on a few occasions that health care professionals are receiving information on TBDs, yet he always prefaces that comment with the fact that he cannot force them to read it. If very busy health care professionals do not believe an issue to be that important, they will not take their valuable time to learn more. Whose responsibility is it to ensure that they realize that the topic is VERY important and that more education is required. For the most part, most health care professionals that have taken it upon themselves to learn more have a personal reason for doing so. They had a family member, friend, or even themselves, struggle to get a diagnosis and treatment due to the lack of knowledge and information.

I have been attempting to form a new Non-Profit Association in Nova Scotia to help address some of the following:

  • Development of a comprehensive website, with information on all stages of Lyme and tick-borne diseases. 
  • Providing accurate, up-to-date, information to health care professionals through podcasts, interviews, Zoom presentations, etc. 
  • Organizing awareness/prevention events throughout the province, including those for Lyme Disease Awareness Month.
  • Undertaking fundraising through a variety of methods including, but not limited to – requesting donations from organizations and people; selling items such as garden flags, etc.; holding events such as a walk/kite flying event that would require sponsors; undertaking presentations to businesses/organizations; having a “gala” (which is a lofty goal); and more.
  • Involvement with health & wellness events throughout the province.
  • Organizing movie/documentary screenings.
  • Tick drags – for awareness/testing?
  • Get the 3 Asks of the provincial government implemented. 
  • Development of a tick testing program in Nova Scotia, for all tick-borne diseases, not just Lyme. That may involve an expansion of Geneticks into the province, but it would be great to provide a free tick testing service.
  • Assist with more research. 

Unfortunately, I am having considerable trouble finding people with the health, time, and energy to be involved in something like this. I do believe something more formal than my NS Lyme Support Group or the NS Lyme Advocacy Group is required. Certainly a website would be very helpful so that all information is easy to locate, but that requires funds which an Association could help obtain. If interested in being involved, please reach out to me so that we can discuss further.

As I was writing this post I received an email with a link to the following research paper – https://www.mdpi.com/2647394, entitled ““Small Wins” for those with Lyme Disease in Canada: Patients in an Embodied Health Movement” which actually details a lot of what I am talking about. There have been “small wins” but there hasn’t been enough significant movement to help those with a later stage of Lyme and TBDs. There is also a large number of people that are unaware that ticks carrying diseases can cause debilitating, and even deadly, issues if not diagnosed and treated early. Many still believe the old adage that they are rare, hard to get, and easy to treat. Many also believe that they just cause a rash and flu-like symptoms. The reality is so different.

Please educate yourself and help educate others.

Let’s Start 2024 With Some Tips & Food For Thought

I, for one, am very glad that 2023 is over. What a year!

Although I’m not big on New Year’s resolutions, I am going to try to make sure that 2024 is much better – in whatever way I can. My first attempt at this will be writing this post about a whole lot of things that I read about, or watched, during the last year that might strike a cord in you health wise.

Our diet has significantly impacted our health and there are many issues that people experience, especially woman, that are overlooked or undiagnosed. I’m going to touch on a few here. I will remind folks that I am not a doctor and the things I talk about are my own personal thoughts and opinions. I’m not recommending anything. I’m just throwing out information for you to investigate further, if interested.

The only magazine I usually read on a regular basis is “First for Women”. Lots of good articles about health, food, etc. Many of the articles list symptoms, potential causes, and recommended diet switches or additions. As many of those dealing with tick-borne diseases know, there are a lot of illnesses out there with very similar symptoms and there are some that suggest that some newer illnesses, like Fibromyalgia and CFS/ME, are actually as a result of tick-borne diseases. Although I’m not diving deeper into that right now, I am open to this possibility and, certainly, looking at symptom lists of a variety of illnesses, including Long COVID, many overlap.

One of the issues that I have had for many years is continual weight gain. Although I eat reasonably well and try to get a reasonable amount of exercise, my weight has continued to increase over the last few years. I recently read about nutritional yeast and how it can help with weight loss and also help if you have a sluggish thyroid. I started adding it to smoothies about a month ago and have since lost about five pounds. This may not seem like a lot to some, but when the scale has only gone up for a long time it is amazing to finally see it going down. I will also be interested to see the results of my next blood test for my thyroid. Over the last year I have gone from Hypo to Hyper and back to Hypo, with my medication changing several times. I will provide an update when I have my next blood work.

The other recent addition to my regular routine is psyllium husk powder. I just started adding that about a week or so ago after reading about it in the January 8th edition of “First for Women”. The article notes that psyllium husk provides soluble fibre. I added this to my diet because recent blood work showed an increase in my LDL cholesterol and apparently psyllium husk can help lower LDL – https://www.health.harvard.edu/heart-health/psyllium-fiber-regularity-and-healthier-lipid-levels. My doctor gave me the option to try to reduce my cholesterol before putting me on drugs. The article suggests that you seek out safe sources as there have been concerns that some psyllium supplements contact a dangerous amount of lead. Do your research!

A possible cause of a number of symptoms such as brain fog; memory lapses; blue moods; anxiety; nausea; bloat; and difficulty swallowing is apparently a tired vagus nerve. Might be something for some of you to check out. Two easy recommendations noted in “First For Women” is deep breathing and humming/singing. Very easy to try these two things that can also help with other things, like stress.

If you are fortunate enough to have a doctor, see about getting blood work for things like Vitamin D, Vitamin B-12, etc. There are a number of things that we can be deficient on and sometimes we may be taking things but they are not working the way they should because they are not being absorbed/utilized properly. I have taken a D3 supplement for many years and have added B-12 not that long ago. I have tried a number of things over the years but you have to be careful. There is such a thing as too much of a good thing, at least for some things.

In a perfect world, we would all be working with a nutritionist/dietitian adequately trained in all the different foods that can help improve our overall health. However, most of us are not, partly due to cost, but mostly due to the fact that very few people are adequately trained in this regard. This is another area that is frequently discussed in the “First for Women” magazine. For instance, there was recently an interesting article on polyphenols and how a daily varied assortment can improve your overall health. There are many articles on this topic. This is just one – https://draxe.com/nutrition/polyphenols/.

If you want some inspiration, and have access to Netflix, there are a couple of shows that I have recently watched that I found to be very informative. One is “Live to 100: Secrets of the Blue Zones”. I enjoyed this so much that I’m now following the host, Dan Buettner. Have a pen and paper next to you to jot down notes about some of the suggestions that you think you can easily incorporate. The other show was “You Are What You Eat: A Twin Experiment”. Although this includes a lot of information on why you should be vegetarian/vegan, it also includes a lot of usable info to improve your health. I have definitely decided to eat less meat and fish, partly because of this documentary; however, it is something I have been thinking about for quite some time.

There are so many little tweaks that we can do on a daily basis that are low cost and easy to do. They may not cure all that ails us, but it just might get you to a point of living a somewhat happier, healthier, life, especially as you then have some control on what is going on in your body.

As always, do your research and make sure that anything that you are adding, or subtracting, doesn’t cause any new issues. We are all different and there is very little, if anything, that affects us all the same way. Only you know your body and how it is feeling. Don’t let anyone suggest that they know what is best, including doctors.