Dr. Paul Cheney’s Treatment Approach to ME/CFS: A Look Back

Editor’s note: Though it’s been two decades since Dr. Paul Cheney first wrote this article on ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) treatments for ProHealth, we were struck by how relevant and useful it is today. We’ve updated it to fit the present language and current terminology for people living with ME/CFS and for reader clarity. We hope this article will continue to be of benefit to those working towards ME/CFS recovery, just at it has been for the last 20 years. If you have any questions about the information containted in this piece, please consult with your healthcare provider for current recommendations regarding treatment.   

Below is a treatment pyramid. The bottom of the pyramid contains the most important strategy for improving your ME/CFS symptoms: Limit setting. Often, ME/CFS patients are very susceptible to push-crash phenomena, and they need to learn to stay within certain boundaries. To the extent they do that, they tend to do better. To the extent they don’t do that, they may not do well.

Potential ME/CFS Treatments

1. Elimination diet. The more I get into the issue of diet and food sensitivities, it’s obvious to me that the single most common antigen to which we are exposed is food proteins. Elimination diets, and improving digestion, and gut epithelial function can pay huge dividends. I’ve seen people in 30 days have huge clinical responses simply by this very simplest of moves.

2. Rebound exercise. We know that exercise can lead to post-exertional malaise (PEM) and a worsening of symptoms in many people with ME/CFS. Progressive aerobic exercise, in particular, especially in Phase 1 disease, is counter-productive. But during some point in the recovery process, you may find that you’re stable enough to engage in exercise, and rebounding is one option to consider. It’s very easy, it’s non-weight bearing, it does a very important job, I think, in autonomic tone in a population that has difficulty with exercise. But the most important thing is not to do aerobic exercise.

3. Stress management. Many patients have a defect in the HPA axis in response to stress, so they have to be stress limited. The need to learn how to handle stress better, and there’s all kinds of ways to do that. Ways like meditation, journaling, or restorative could be great places to begin.

4. Belief systems. A change in orientation from “doing” as a definition of  yourself to “being” as the definition of yourself, and and to orient from recovery to healing. As soon as you orient toward “being” and healing, interestingly, ME/CFS patients are far better able to “do,” and I think far better able to heal — and recover.

5. Integration of supplements. Some of my preferences include:

  • Magnesium: Magnesium is an important element. Many are magnesium depleted.
  • Taurine: Taurine is very important in brain protection.
  • Mitochondrial DNA protection: We use a mix of things, such as a multi-vitamin chelated-mineral complex.
  • Plant bioflavonoids: Plant bioflavonoids are very important. Examples of plant bioflavonoids are proanthocyanadins, French maritime pine bark, silymarin, quercetin, and there are many others.
  • CoQ10: CoQ10 is a critical item in the protection of the DNA. I think the more the better, but realistically 200 mg. We tend to use it crunched under the tongue since it’s not very well absorbed, although there are other absorbable forms that can be swallowed.
  • Alpha lipoic acid: Alpha lipoic acid may be one of the most important of all of these, in high doses, particularly for the central nervous system.
  • Vitamin E: Extra vitamin E, an antioxidant, because it becomes depleted.
  • Melatonin: Melatonin may be helpful also. It’s a potent antioxidant in the brain, particularly.

6. Medication options.

  • Klonopin: For me, Klonopin is my most effective drug over the years. We use very low doses in the daytime. And at night we use higher doses.
  • Doxepin elixir: An antidepressant with potent antihistamine properties. I suspect that this is the most powerful antihistamine known to man, and it gets into the central nervous system. We use very small amounts of this, and small doses at night.
  • Neurontin: We’ve been using Neurontin sparingly. Neurontin could be a very potent weapon in resistant cases, but I’m a little bit concerned about the extremely high doses that are being used in some patients.

7. Detoxification. In ME/CFS patients, two thirds of them have no detectable B-12 in their brains, even though their blood levels are normal. We use high doses. We prefer hydroxycobalamin, and perhaps methylcobalamin.

8. Root canals. Root canal extraction, and particularly careful regarding bone excavation. This could be a big issue in some people, and heavy metal issues could be very prominent in some people.

9. Chemical detoxification. Some people are loaded with all kinds of pesticides and things, and they may need to be detoxified ultimately to see success.

10. Gut health. Implement the “3-R” program to bring back gut ecology. Remove the bad guys; support and repair the epithelial integrity, and then replace with friendlies.

11. Liver-gut resuscitation. The undenatured whey protein concentrate, I think, is the most important element in resuscitation of the liver and gut. Add silymarin to recycle glutathione between it’s reduced and oxidized states.

This pyramid is an integrated program. No one element suffices —i t’s everything working together. It’s a stepwise program, meaning you move up the scale every one or two weeks. You don’t start it all at once. Patience is required for ME/CFS recovery.

The article was first published on prohealth.com on March 10, 2000 and was updated on March 17, 2020. 

 

Why am I still sick? 5 Roadblocks to Lyme Recovery

Lyme disease is, unquestionably, one of the most challenging and complicated diseases to treat. Many doctors who treat both Lyme and cancer have shared with me that, as a general rule, Lyme is even more difficult to treat than cancer. And sadly, many people who battle chronic Lyme disease have trodden a long, difficult path, spent thousands of dollars and many years on treatments—only to feel as though they are no closer to the finish line than when they started.

If this is you, I feel your pain. I have been there myself, and I intimately understand the frustration of expending, and spending, all of your time, energy, effort and money on Lyme disease treatment—only to suffer one horrible detox reaction after another and not feel any better at the end of it all.  I don’t know why healing seems to come more easily for some than others, but I do know that if you aren’t better, after much effort, it’s not necessarily because you are doing something wrong.

People with Lyme disease are all infected with a unique bunch of microbes, each of which varies in its pathogenicity, virulence and effects upon the body, so there’s no such thing as a “one size fits all” treatment that will work for everyone. Furthermore, people with Lyme aren’t just dealing with a single microbial infection; I cringe every time I hear a news reporter say that Lyme is “a Borrelia burgdorferi infection transmitted through the bite of a tick.” I don’t know how this myth continues to get perpetrated, but for those in the media who still haven’t bothered to do their research –Lyme disease is not all about Borrelia, and it is not just spread through a tick bite. It can be transmitted through other insects and from person to person, as well as via other means.

Not only that, but people with Lyme disease are usually infected with multiple pathogenic microbes, which cause literally every organ and system in the body to malfunction, and which, as a downstream effect, creates new health issues. And often, Lyme infections are just one cause of symptoms in people with the disease. For instance, mold and heavy metal toxicity can be a cause or effect of Lyme. One makes the body more susceptible to the other.

In any case, most diseases today, including Lyme, can be boiled down to four causes: environmental toxicity, microbes, nutritional imbalances, and trauma. All of these disease factors are present in most people with chronic Lyme. Rare is the soul who gets well from simply taking some antibiotics. It has just become more complicated than that for most of us.

For this reason, any doctor who treats Lyme disease, as well as all of us who have been infected with Lyme microbes, need to understand that once Lyme becomes a chronic condition, simply going after the infections isn’t going to get people well.  The bugs must be cleared out, no doubt, but the body must also be detoxified, repaired, restored and replenished, and its systems balanced, and any other underlying causes of disease, such as mold toxicity, must be addressed.

Interestingly, many of the doctors that I interviewed for my book, New Paradigms in Lyme Disease Treatment: 10 Top Doctors Reveal Healing Strategies that Work, shared with me that over half of all people with chronic Lyme also have mold toxicity, and absolutely will not recover from Lyme unless the mold is also addressed. Yet how many Lyme doctors test their patients for mold toxicity? Not many.

The good news is, there are increasingly more doctors who are becoming informed about chronic Lyme and putting together more pieces of the puzzle. If you’re not getting better, it may be that your doctor has missed one of these crucial pieces. Following is a short list of factors that affect recovery from Lyme, according to what I have learned from my interviews with dozens of Lyme-literate physicians, and through my own personal research and healing journey.

I encourage you to share these with your doctor so that together, you can find solutions for these issues.  The more pieces of the puzzle that you can address, the greater will be your chances for recovery. Keep in mind, not all of the following will apply to everyone, although most people that I know who have battled Lyme disease symptoms have found all of these important to address, to some degree. Also, this is not a comprehensive list; I’ve chosen to share only those that are an issue for the majority of people with Lyme.

Combating Chronic Lyme Disease

1. Mold Toxicity: Mold removal, which I just mentioned, is not a do-it-yourself treatment. Like Lyme, mold treatment is complex and requires working with a doctor who understands the importance of removing live mold from the body as well as removing mycotoxins (or mold toxins) with the right binders (which differ for everyone, according to the type of mold they are infected with and their unique constitution).

2. Non-Lyme Related Microbial Infections. This could include parasites, fungi such as Candida, viruses such as Epstein-Barr, Cytolomegalovirus and other pathogenic organisms such as Mycoplasma. All are common in people with chronic Lyme disease, since Lyme weakens the body in such a way that makes it susceptible to these other “opportunistic” infections.

3. Environmental Toxins. Many studies have proven that we are all overloaded with chemical and electromagnetic toxins. These toxins cause all kinds of chronic, degenerative diseases and can be a primary cause of symptoms in people with Lyme, even more so than the microbes themselves (depending of course, upon the person). We breathe these toxins in; they are found in the air, as well as in our food and water supply. Dietrich Klinghardt, MD, PhD, who is featured in New Paradigms in Lyme Disease Treatment shared with me in his interview for the book that the incidence of death from neurological disease among women has skyrocketed over 600% over the past 20 years, due to toxins such as glyphosate and aluminum, which are prevalent in the environment. These toxins damage the brain and nervous system so getting them out of the body is paramount for healing.

Solutions for doing this can be found in my book, as well as in a short book that I co-authored with Lyme-literate doctor W. Lee Cowden, MD in 2014 entitled, Create a Toxin-Free Body and Home…Starting Today. There are many other resources out there, but regardless of the resource you choose to learn about detox, the most important takeaway message here is that you must make detoxification as much of a priority when healing your body as removing the Lyme infections. It can’t be relegated to something that you do when you have a few minutes of spare time. Toxins play a major role in Lyme disease.

4. Balancing the Body’s Systems. Lyme disease affects the gastrointestinal, neuroendocrine, immune and other systems of the body. In many people with Lyme, especially women, the hormones are completely out of whack, and the body will not recover unless support is given to balance the hormones. For most, this means taking nutrients, herbal remedies and bio-identical hormones to support adrenal gland and thyroid hormone production. Vitamin C, licorice, pantothenic acid, Siberian and Panax ginseng and adrenal glandulars are popular adrenal-support nutrients, although some people may also require bio-identical hormone supplements such as pregnenolone, DHEA and even hydrocortisone. Thyroid support may include iodine, selenium, tyrosine and bio-identical thyroid hormone.

In addition to hormonal support, most people with Lyme are deficient in a variety of amino acids, which are used to make proteins for the body. A complete amino acid product can be useful for healing the body, as can specific amino acids to help restore deficiencies. I recommend consulting your doctor to determine which amino acids you might need.

Supporting the health of the gut is similarly important, as most people with Lyme have a damaged gut, as a result of infections and toxins. Supplementation with hydrochloric acid, digestive enzymes and a quality probiotic is essential for most, as are nutrients to repair the gut such as glutamine, aloe, marshmallow root and/or slippery elm. But again, you’ll want to consult with your doctor to determine exactly what you may need.

These are just a few areas that commonly need to be addressed in order to balance the body so that it can effectively recover from Lyme. Without the right raw materials, the body simply can’t heal, so doing nutritional and other tests is important for discovering what you might need to get to the next stage in your recovery process.

For instance, Vitamin D, magnesium and zinc are all common nutritional deficiencies in people with Lyme, and without these nutrients, your immune system can’t function properly.  Therefore, replenishing your body’s nutritional stores, balancing your hormones and restoring your gut are just a few things that will help your body to rebuild itself so that it has the ammunition that it needs to fight Lyme.

5. Healing Emotional Trauma.  Many studies have proven that stress, depression and anxiety, which result from both Lyme and trauma, can lead to disease. This is because when the body is in a state of “fight or flight” or high anxiety, and/or depression, the immune system shuts down. For many of us with Lyme, emotional trauma was a precursor to disease, so resolving the negative emotions, harmful belief patterns and thoughts that are a natural outcome of trauma (although not beneficial) is crucial for recovery.

Sometimes, deprogramming the limbic system from its stress patterns, with tools such as Dynamic Neural Retraining, can also be helpful, since the autonomic brain becomes conditioned to respond in a stressful way to situations once it has been programmed by trauma. In addition, there are many tools out there for healing the emotions on both a cognitive and mind-body level; counseling, inner healing prayer ministry, and Emotional Freedom Technique (EFT) are just a few of these.

This article was first published on ProHealth.com on July 21, 2016 and was updated on March 17, 2020.

Connie Strasheim is the author of multiple wellness books, including three on Lyme disease. She is also a medical copywriter, editor and healing prayer minister. Her passion is to help people with complex chronic illnesses find freedom from disease and soul-spirit sickness using whole body medicine and prayer, and she collaborates with some of the world’s best integrative doctors to do this. In addition to Lyme disease, Connie’s books focus on cancer, nutrition, detoxification and spiritual healing. You can learn more about her work at: ConnieStrasheim.

The Truth about Healing and Relapsing Everyone Should Know

Previously, I presented part one of a two-part interview with Lyme-literate nurse practitioner Ruth Kriz on the limitations of Lyme disease testing from a nurse’s perspective. In this piece, Kriz furthers her discussion on Lyme disease symptoms, information the medical community may not know about, recovery, relapses, and patient resources. While these articles reflect Kriz’s approach to treating Lyme disease, it’s important to note much of this content can serve as talking points when you are communicating with your healthcare provider.

Following is part two of my interview with Ruth Kriz.

Lyme disease Symptoms, Recovery, and Relapse

Jenny Buttaccio (JB): In the patients that you see, is there a “typical” presentation of what Lyme looks like?

Ruth Kriz (RK): Often, these infections have been camping out in a person for a very long time. Then, the immune system takes a significant hit, and the [infections] bloom. The CD 57 is a natural killer cell that takes the hit if someone has been infected with Lyme. The lower the number, the longer it has been since the original infection; it does not correlate to how sick a person is. But, it’s a clue as to whether I’m looking at an infection that has been there since childhood, or a more recent one. The people I see that have a lower CD 57 have had a longer time for these infections to settle into the body. [The infections] can be deeply entrenched in the nervous system, and patients can have symptoms like brain fog, word finding difficulties, and muscle twitching. In the patients with interstitial cystitis, the infections could be in the bladder or the nerves going to the bladder. I tend to see more complex symptomatology and the need to treat longer in people who have lower CD 57’s, than people who don’t.

JB: Are there some areas regarding Lyme disease treatment that you feel some clinicians don’t fully understand?

RK: They don’t understand biofilms or other forms of infections, like the cyst form (of Borrelia), that virtually become undetectable to the immune system. The biofilms wall the infections off, and once they get established in the joints and nervous system, they can take a heck of a lot longer to root out. If they’re not addressed, you will have relapses. The infections will continue to multiply at a very slow rate over an extended period–and that could go on for years–before it’s enough to make you symptomatic again. Some people do a better job of breaking down biofilms than others, based on a variety of genetic factors.

Also, maybe other clinicians aren’t factoring in how long the infections have been deeply entrenched in the body? The medical system typically works on protocols. For example, if you come to me, I give you this medicine for (a specific) length of time. Then, we go after these infections for that length of time, and you then “pop out” on the other end and declare that you are now well. The problem is that doesn’t work for Lyme, because everybody presents with a different infectious load, a different number of coinfections, and a different number of biofilms. So you can’t just march everyone through the same program and expect the same response.

Finally, many physicians aren’t aware that Lyme depresses some of the immune markers that are used to diagnose it according to CDC standards. Therefore, patients have a lot of false negatives, and physicians don’t believe that the Lyme is there, when, in reality, it is.

JB: Do you have any insights as to why Lyme disease recovery may have stalled out or why a patient might relapse?

RK: I have a couple of theories about it. I think it’s difficult to know when the Lyme is adequately treated. When we’ve reached the negative point, it is often long after the symptoms have receded. Sometimes, when you’re very sick and start feeling better, you think you’re done treating. But the reality may be that you’re not.

The second issue in chronic Lyme disease is that just because you’ve been diagnosed with Lyme doesn’t mean that you don’t have other coinfections making you sick as well. The last tick I sent out for DNA testing came back with 43 tick-borne infections. Many of the tick-borne infections that tend to persist–we’ve got Bartonella, Babesia, Ehrlichia, Anaplasmosis, Brucella, Rocky Mountain Spotted Fever, Mycoplasma–competitively inhibit each other. When you knock the big ones back, some of the little ones become bigger players, and people continue to be sick. Just because you’re still sick doesn’t mean it’s because of the Lyme. It could very well be an undiagnosed coinfection.

JB: We know many Lyme patients are financially strained. What steps has your office taken to help Lyme patients?

RK: Patients have already spent tens of thousands of dollars before they ever call me. We have an account with the Professional Co-op so that if people don’t have health insurance, it will pay for some of the routine commercial lab tests; we can get discounted rates. We also try to figure out which tests are a priority so that it isn’t such a big expense up front. I try to use the labs that accept insurance, but some of the specialty labs don’t fit into the mainstream picture, so they’re cash only. Some of the labs I work with have been very generous in allowing us to select people who need the testing but really can’t afford it on their own.

There are a certain number of pharmaceuticals that we can provide to people at extremely good rates as well. It’s not a huge selection, but it’s better than zero. I also have a couple of connections with some pharmacies that give us samples. Prescription Hope has been very generous in helping people if they qualify to get medications at lower costs. I do what I can; it never seems to be enough because the needs are always surpassing the resources.

Finally, don’t discount the efficacy of herbals. There are some very affordable, user-friendly approaches. Herbals have great advantages in that you can titrate the dose by the drop. Therefore, you can control how much herxing goes on. [Herbal protocols] can be a primary therapy, as well as, an adjunct therapy. It can be ideal for children; many flexible spending accounts will reimburse for herbals.

JB: Thank you so much for willingness to do this interview. Is there anything else you’d like Lyme patients to know?

RK: Yes! When you start killing many of the tick-borne infections, they release toxins. These toxins are pro-inflammatory, and they will cause the areas of your body where the infection has been to flare up. This is where detoxing becomes even more important. Pulling the toxins out of your body and helping your liver get rid of them is going to mean you can continue treating more effectively and not have your whole life disrupted because you can’t function.

Finally, there’s a myth out there that Lyme disease is untreatable, that you’ll always have it, that people don’t get well, but that’s not been my experience either personally or with the vast majority of my patients. I think it takes persistence. It takes commitment. It takes educating yourself about how your body responds to treatment and learning what the roadblocks are for you, but it’s possible to get better.

This article was first published on ProHealth.com on May 18, 2017 and was updated on March 14, 2020.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is a former occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVDNew Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio

Can Lyme Disease Really Impact the Heart?

Lyme disease is a complex of infections that are transmitted by deer ticks and other insects. It can cause general flu-like symptoms as well as joint and muscle pain, fatigue, cognitive problems, and more. Cardiac symptoms occur, by some estimates, in less then 10% of Lyme cases, usually when treatment is omitted or delayed (one month or more after the tick bite).

Lyme Disease and Heart Symptoms

One bacteria involved in Lyme, Borrelia, can invade the heart muscle and cause heart symptoms, including a condition known as Lyme carditis, or infection of the heart tissues. If left untreated, it can cause heart block, which results when the electrical signal of the heart (that causes the heart to contract) gets interrupted. This can occur in varying degrees of severity, designated as first, second, and third degree heart block. If you experience any chronic Lyme disease symptoms that seem heart-related, don’t let it go. You should notify your physician so they can be evaluated for cardiac complications. Symptoms may include:

  • Palpitations
  • Dizziness
  • Fainting
  • Shortness of breath
  • Swelling of feet or hands

Third degree heart block, called atrioventricular block, is the most severe and may require the implantation of a pacemaker, which regulates the heartbeat and restores the normal function of the heart.

When the conduction of the heart’s electrical signal is not working properly, abnormal heart rhythms can occur. One of the most common is atrial fibrillation (AFib), in which the heart beats very fast and causes palpitations, dizziness, and difficulty breathing.

AFib is treated with medication to regulate the heartbeat and help the heart pump more efficiently. Also, blood-thinning medication is usually required because blood can pool in the heart when the heart is pumping too fast. Clots that form in the heart can travel to the lungs, causing a pulmonary embolism, or to the brain, causing a stroke.

If a patient has pre-existing heart disease, a procedure called cardiac catheterization may be needed to open clogged arteries of the heart so blood flow to the heart is improved. Coronary artery bypass graft is a surgical procedure performed when multiple arteries are too clogged and must be repaired through “open heart” surgery.

If the heart valves (which separate the four chambers of the heart) are damaged through a Lyme infection or preexisting heart disease, valve replacements can also be performed.

After cardiac surgery, it is recommended that patients participate in a cardiac rehabilitation program where the heart is monitored as patients engage in physical therapy exercises to strengthen the heart.

If heart function becomes impaired to the point where the heart does not pump enough blood to the rest of the body, congestive heart failure may occur. This is uncommon, as treatment with antibiotics usually prevents cardiac involvement. With congestive heart failure, blood flow backs up instead of going forward from the heart to the rest of the body. This can result in swelling in the lungs or body, mostly seen in the hands, abdomen, legs, or feet.

Treatment for Heart-Related Conditions

Treatment for congestive heart failure includes medications to treat infections and to help the heart pump more efficiently by removing the extra fluid that accumulates in the body. Patients are instructed to monitor themselves for lung congestion, shortness of breath, swelling, and weight gain. Hospitalizations may be required if shortness of breath, excessive swelling, or increased weight gain occurs.

A low sodium diet is recommended for any type of heart disease because salt in the diet can cause fluid retention, which makes the heart work harder and increases blood pressure. Patients should use salt substitutes and avoid foods high in sodium, such as frozen prepared meals, deli meat, breakfast meat, fast food, and boxed or canned foods. A “heart-healthy” diet is recommended, which includes whole grains, fresh fruits and vegetables, and meats low in saturated fat (poultry, fish, and lean beef). Foods high in sugar and saturated fat should also be avoided.

Tests which might be used to determine the degree of cardiac involvement are lab work, electrocardiogram, echocardiogram, chest x-ray, and MRI. Sometimes a biopsy of the heart tissue is taken for evaluation. Treatment is based on the severity and degree of symptoms.

The good news is that heart complications are uncommon (seen in less than 10% of Lyme cases) and can be avoided if Lyme disease is treated with effective antibiotics early, preferably within the first month. Not all cardiac complications result in congestive heart failure if treated promptly. If heart complications do occur, many times medications and a heart healthy diet are effective for helping Lyme disease patients to have a long and satisfactory quality of life.

This article was first published on ProHealth.com on February 22, 2016 and was updated on March 09, 2020.


Laurie Miller is an author, wife, mom, registered nurse, and patient with chronic illness. She enjoys spending time with family, reading, and blogging at God-Living with Chronic Illness.

 

 

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Continue reading “Can Lyme Disease Really Impact the Heart?”

Learning to Live with Fibromyalgia – 5 Personal Insights

Insights from Living with Fibromyalgia

After months or even years of searching for an answer, receiving a fibromyalgia diagnosis can bring with it an initial sense of relief. It’s reassuring to finally understand why you have been feeling so terrible, and to know that it is not all in your head as some doctors may have suggested. However, a diagnosis is not the conclusion to your story with fibromyalgia. In fact, a diagnosis signifies the start of a new journey.

Although I was initially relieved to receive a fibromyalgia diagnosis, what followed was months, if not years, of learning to accept it. What I did not appreciate in those early days was the fact that this illness is for life, and to live well with it you must adapt. I naively thought that I would be able to overcome fibromyalgia and continue with my life as though nothing had happened. Looking back, I can now see that I was simply in denial, which coincidentally is the very first stage in the road to acceptance — a road with a multitude of bumps and unexpected turns along the way. I would say that acceptance is very much an ongoing journey rather than a destination. However, I have learned many things along the way that helped me to feel more accepting of my illness and the limitations it places upon me.

5 Important Things I Learned Through Living with Fibromyalgia

1. The Importance of Forgiveness — Specifically Forgiving Myself

As I mentioned above, I tried to continue with my life as though nothing was wrong with me in those early days after I first received my diagnosis. This turned out to be an unhealthy mentality and for a long time, I held a lot of resentment, frustration and anger towards myself. All because I struggled to do certain tasks, some of which had become downright impossible for me to achieve. However, the longer I lived with fibromyalgia, the more I began to understand the impact it had on my life. I rationalized that I did not want to continue my life with this feeling of resentment towards myself. I had no choice about having this illness, but I did have a choice regarding how I handled it. I could either live my life with fibromyalgia and continue to be resentful, or I could make the most out of a bad situation and try to be as positive as possible.

It took me quite a long time, but I began to learn the importance of forgiveness. I have realized that it is neither my fault, nor is it my choice to live with the limitations fibromyalgia places upon me. Giving myself a hard time over it is incredibly unfair. I have, therefore, learned to practice forgiveness on myself. A positive from this is that I have been able to let go of the guilt and resentment I was holding onto and I feel much happier in myself.

2. Accepting Help Is Not a Failure

Allowing other people to help and assist me was something I really struggled with in the initial stages of my illness. It felt like pieces of my independence were being taken from me, and I resisted it for as long as I could. I would struggle on and try to be super woman, but unfortunately I am not blessed with superhero powers; I’m a woman with a chronic illness and I need help. What I have since learned is that others helping me does not make me a failure in any way, shape or form. It makes me sensible.

Unfortunately, I do not have boundless amounts of energy, and each day I only have a limited amount of energy to get me through. To get by and to enable me to do some of the things I enjoy, I simply cannot do it all. I need help with many things, such as cooking and cleaning. When I can repay a favor, I do, and I feel good about that. I have realized that people help me because they genuinely want to and because they feel good about doing so. My life is much better now that I accept help, as I am no longer constantly exhausted or in excruciating pain from overdoing things.

3. You May Lose Friendships, but the People Who Love You Stay Around

Fibromyalgia can be very isolating at times, and I am known to become a bit of a hermit when I am suffering from a flare. Like many, I am no longer able to attend every social event. I have spoken to people who have lost friendships as a result of their illness, and I have admittedly lost contact with some people, too. Although friendship has to be a two-way street, there needs to be a level of understanding for people with a chronic illness like fibromyalgia, and an appreciation that we may not be well enough to do everything we would like to. Without this appreciation, a friendship can become toxic.

Saying no is not always because we don’t want to do something; it is often because we simply can’t. So long as we are open about our struggles, our friends need to be understanding of this. I used to put up walls and try to keep my illness as hidden as possible. The reason I did this was because I didn’t want people to think of me any differently. I did not want sympathy, and I didn’t want people to see my illness before they saw me. However, I have realized that the more open I am, the bigger my support network becomes. I have learned to cut ties with people who cannot accept the limitations of my illness and instead focus my energy on the people that do. Fortunately, the people who genuinely care and love you are the ones who are always there for you and do not judge.

4. Your Self-Worth and Identity Are Not Defined by Your Work

One of the biggest struggles I have faced over recent months has been my inability to work. My job, which is demanding work, has unfortunately been beyond my current level of health. The fear of being unable to return to this line of work is very much at the forefront of my mind. Admittedly, the thought of giving up work due to chronic illness is daunting. I previously worried that having to give up work would leave me feeling as though I had lost a part of my identity and self-worth. This of course is not helped by social pressures. However, I have come to realize that a job is only a part of my life, not a part of who I am. I am a loving wife, caring daughter, photographer, writer, and I am quite crafty to boot! I am so much more than a job and have a lot to offer other than work. My self-worth and identity are not defined by a job. I therefore will not allow anyone to make me feel as though I am less of a person due to my inability to work.

5. Life Doesn’t Always Go As Planned, but That’s Okay

As humans, it is in our nature to plan ahead and imagine what our life will look like. We are encouraged from an early age to think about what we want to do in the future. I think I can speak for everyone when I say that fibromyalgia was never featured in that life plan. For a few fortunate people, illness may be a short bump in the road, but for many it will change the journey completely. This isn’t necessarily a negative thing, even though it may seem like it at the time. I do believe that everything works out in the end; I have to — it’s what keeps me going. However, I have realized that the end result may be vastly different than what I imagined for myself, though I am learning that’s okay. I no longer know what is around the corner for me. However, since falling ill, I’ve discovered new passions, with writing being just one, and I’m excited to find out where life takes me.

This article, originally published on ProHealth on April 22, 2015, was updated on March 3, 2020.


About the Author: Donna Grant was diagnosed with fibromyalgia in 2013 and subsequently began blogging about life with chronic illness. She shares her journey and how she has improved her life with fibro and other chronic illnesses, as well as inspirational posts, on her website and blog February Stars.

The Limitations of Lyme Testing From A Nurse’s Perspective

Recently, I had the honor of interviewing Ruth Kriz, a Lyme-literate, 30-year nurse practitioner in Washington, D.C. and a fellow Lyme disease survivor, to discuss the diagnosis and treatment of tick-borne infections, the best Lyme disease test, biofilms, and more. In part one of this two-part series, Ruth has been a multi-time presenter at the International Lyme and Associated Diseases Society (ILADS). Here, she reveals how she began treating chronic Lyme disease, the limitations of testing, and communication strategies between patients and clinicians.

Ruth has an education background and has taught nursing to LPNs through graduate-level nurse practitioners. In her years as an educator, she’s observed that the medical community is often undereducated in their knowledge regarding Lyme disease and tick-borne infections; many healthcare providers believe Lyme disease is an acute infection and are misinformed regarding the chronic, persistent nature of this illness. Ruth has chosen to speak publicly about her expertise with Lyme disease and coinfections, like Bartonella and Babesia, in the hopes of helping patients receive a proper diagnosis, along with widening the medical community’s understanding of these illnesses.

Below is my interview with Ruth Kriz:

Understanding the Shortcomings of the Most Common Lyme Disease Test

Jenny Buttaccio (JB): How did you get started treating Lyme patients?

Ruth Kriz (RK): I guess you could say it was through the back door. I had interstitial cystitis for 11 years, and I started doing more precise diagnostics with broth cultures because the traditional cultures were coming up negative. One of my patients told me that she had been diagnosed with Lyme disease. When she treated Lyme, her interstitial cystitis went away. So, that started me looking into the connection between tick-borne infections and its connection with interstitial cystitis. Since then, I’ve treated over 2,500 patients. In 98 percent of them, I’ve been able to document tick-borne infections.

JB: In your view, why are so many patients having a hard time getting diagnosed with Lyme disease?

RK: According to CDC, the way you diagnose Lyme is through an antibody test. An antibody test is not testing for Lyme itself; it’s testing for the body’s immune system response to Lyme. When you first get infected, your IGM (immunoglobulin M) is the early responder. It goes up in four to six weeks. Therefore, doing a test for Lyme when you first see a bull’s-eye rash, find a tick, or think you’ve been infected is really inaccurate because it’s going to take several weeks for those antibodies to go up. The IGM stays up for four to six months. As it’s coming down, the IGG goes up. The IGG can stay up for a year, sometime two years. Then, it starts to go down as well. Using a test that only looks at immunoglobulin IGG and IGM is going to miss a lot of people who were either tested too early or too late. So, the race has been on to try to find a better way — better markers – of diagnosing the Lyme.

There are tests that to do DNA testing on urine, blood, or cerebrospinal fluid. In regards to cerebrospinal fluid testing, the literature from 15 years ago says less than 3 percent of people with neurological Lyme test positive with a spinal tap, so that’s not helpful. There are some better antibody tests like IGeneX as well, where you’re more likely to get a positive western blot. But, to answer your question, there are really no good diagnostic tests for Lyme if you’re not in that window to get a good antibody response. The best we can do right now is to look at other markers that respond in the body when Lyme is active.

JB: I’ve heard other doctors suggest that Lyme disease is a diagnosis based on clinical presentation and supporting tests can be useful to help confirm the disease. Do you also hold this belief? As a follow-up question, why are so few clinicians willing to treat Lyme?

RK: That’s what we’re left with if we don’t have a reliable test. Because of the political climate surrounding Lyme, some clinicians feel if they don’t have any documentation in a patient’s chart to prove they have Lyme, they’re going to come under fire from their state medical boards. So, yes. It does need to be a clinical diagnosis. But sometimes practitioners are put in a corner. And to step out on that limb, they might risk their license.

Regarding the second part of the question, the medical education system is geared toward acute infections. Overcoming the infections that were public health threats (like smallpox, anthrax, diphtheria, and polio) and had high morbidity and mortality rates, naturally became the focus of research. Even though 70 percent of the patient population a family practice physician sees deals with chronic illness, the medical community insists on acute care. So the mindset of the doctor is you come up with an ICD-10 code. You have your particular protocol. This is the medicine you give. Then, the patient leaves the office. There’s a whole different understanding as to how you treat acute infections, and how you treat chronic infections.

JB: Are there ways patients could better communicate their Lyme disease symptoms or needs to clinicians?

RK: Often, doctors feel like their job is first to rule out the big, nasty stuff going on. After that, they’re not willing or able to tackle the intensive, patient-care demands of a chronically, sick Lyme patient. From my perspective, I think Lyme patients could interface more effectively with the medical community if they could write down the points they want to talk about during their appointment. Also, they can be sensitive to the fact that the practitioner has a schedule and 10 or 20 people after them on that schedule. It’s hard for practitioners to deal with a large Lyme population because their needs are extensive. Not every practitioner is emotionally or knowledge-base equipped to handle the complexity of patients with Lyme. I love what I do. I’ve had Lyme myself. But I also see things from the other side. There’s a lot of skill involved in managing complex patients, and not everybody feels competent enough, or is interested enough, or can financially even afford to provide that level of care.

Patients must become informed, be educated and be their own advocate for Lyme disease treatment. They need to find a practitioner they feel is hearing them for their best chance at Lyme disease recovery.

To find a Lyme literal medical professional in your area, fill out the Doctor Search page on the ILADS website, visit the state support group page on LymeDisease.org, or check Facebook for online forums in your area. Many support group moderators and facilitators will be able to provide you with a list of doctors in your region. 

This article was first published on ProHealth.com on April 25, 2017 and was updated on February 27, 2020.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is a former occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVDNew Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio

The Impact of the 5 Stages of Grief in Lyme Disease

You often hear people mention the grieving process when they lose a loved one, go through a painful divorce, or receive news of a terminal illness. Those suffering from chronic Lyme disease also experience this process, yet it is usually not referred to as “grief.”

During the grieving process, Lyme disease patients go through the usual stages of the grief cycle or process, which include:

  1. Denial or isolation
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

When I received a Lyme disease diagnosis in 2002, I went downhill quickly. I was unable to do anything myself, partly due to the damage that Lyme had caused to my central nervous system, which included vision loss and an inability to speak clearly. In the hopes of helping myself to get through it, I kept a journal, which I stumbled upon the other day and began reading. I did not recognize myself from the words I wrote years ago. Was this really me?

I realized that I had been experiencing the same symptoms associated with grieving, such as anger, fear, guilt, sadness and shock, or disbelief and numbness. Other physical symptoms that I documented myself as having included: immense fatigue, insomnia, nausea, weight loss and weight gain, aches and pains, and immune issues.

Following is more information on the stages of grief and how I experienced them.

1. Denial and Isolation: 

(Disbelief, Shock, Yearning or the thought that “This can’t be happening.”)

In the beginning, I isolated myself from family and friends. I kept all of my feelings inside and didn’t speak about what was happening to me. I don’t think they even knew the extent of how bad my Lyme disease symptoms were and how much it was affecting me. I often cried, but not openly. Many times, it was during a shower or while my family was either sleeping or gone. I wavered between thoughts of, “This can’t be happening to me,” and “Why me?”

Finally, I found a neurologist that believed what I was going through and wanted to help by prescribing IV Rocephin for Lyme disease treatment. I was elated. Once I was done with the 28 days of IV Rocephin, I believe I was going to be alright!

Actually, I was in denial that it might have been too late for that. And initially, I was in disbelief that the disease had not been treated correctly and had probably progressed beyond the point of being curable. So I went into shock when I found out, and during the three months that I was searching for answers, the bacteria caused a lot of  damage in my body, and later, I realized that it was going to be very difficult to reverse, repair or cure. I could not believe that after the Rocephin, I hadn’t seen much progress. I kept saying to myself: This can’t be happening!

2. Anger:

(Why Me?)

Then, I went through a process of being angry. Why wouldn’t the doctors listen to me? I was so angry because I knew almost the exact date and time when my health began to go downhill. Why didn’t they believe that it all began when I found the tick and saw the bull’s-eye rash? The doctors kept stating that my symptoms were just a coincidence. Whenever someone asked how I was doing or what had happened, I became so upset that I’d begin shaking and cry tears of anger. Why did the doctors ignore me and treat me like I was a lunatic? I was often told that my symptoms were all in my head.

Another question I’d ask myself was: Why wouldn’t the doctors give me antibiotics for a bit longer? I told them the symptoms I was experiencing were still part of the early signs of Lyme disease. If they had listened or done Lyme disease testing, I would not have reached the critical point where I had to have someone else feed, bathe and clothe me!  I felt so brutally angry that all they did was call me crazy or label me as “clinically depressed,” or a “hypochondriac” — as well as many other things. Why did they let this happen?

3. Bargaining:

(Guilt or What If?)

Then, I entered the bargaining stage. My thoughts fluctuated between “if I had only found this doctor sooner” or “if I had done more thorough research and been more demanding,” this would not have happened. I found myself asking many “What IF” questions, such as:

* What if I don’t become well?
* What if I have to be taken care of like this from now on?
* What if my sweetheart begins to resent me?
* What if he decides that he can no longer take care of me and leave me?

At night, whenever I would cry, I would find myself bargaining with God: “If I get well, I will be a better person,” or “If I get better, I will do this.” There were numerous entries in my journal that indicated that I was going through this bargaining stage.

4. Depression:

(Mourning, loss, regret, fear and goodbyes.)

As part of the grieving process, I mourned the loss of being able to do the daily activities that I had once taken for granted. I felt the loss of being sought after for answers and information by others and formerly  being called the “encyclopedia.” I mourned that I was no longer highly regarded by others for my knowledge. I cried because I was no longer considered the best at what I did. I felt at a loss because I no longer could remember people’s names after only meeting them once. Loss, loss, loss!  It surrounded me.

I read entries in which I said goodbye to my family and friends, in a sense. My rationale for saying goodbye was that they’d be far better off without my bills or having to take care of me, helping me dress,  cooking for me and feeding me. I had actually written goodbye letters. I had outlined specific bequests.
Fearful thoughts also surfaced many times throughout my journal. These manifested in questions such as:

* Will I learn to deal with the fact that I cannot walk on my own anymore?
* Will I ever regain my night vision?
* Will I ever be able to speak without stuttering?
* Will I ever be able to convey my true feelings, like I once had?
* Will I ever be able to read again?
* Will these “shakes,” that reminded me of Parkinson’s disease cease?

5. Acceptance:

(Making peace or achieving a sense of calmness.)

Finally, as I progressed with Lyme disease treatment, I began to shuffle or slide my way around the house. Eventually, I was able to walk slowly with some assistance, which gave me hope. I found a sense of peace that I now was walking and getting dressed. The ability to dress and feed myself instilled confidence in me, and I began to reach out, to a few select friends. By listening and accepting me as I was, they helped me to move forward. With their support and understanding, they helped me to understand that I was much stronger than I thought.

Eventually, those strong feelings of anger began to subside slowly. The “Why me?” and bargaining sessions began to lessen. I found myself able to smile and laugh more. I’d say that I was finally accepting things as they were.

My acceptance of my situation didn’t mean that I was ready to give up on becoming better, but I was ready to face the future. And I would continue to do all that I could, to improve physically, emotionally, spiritually and otherwise.

Please remember that there is no timeline under which these five stages of grief occur; they are not set in stone. These stages were not meant to define how you should deal with your grief. They are simply a guide to the emotions and feelings that many people with Lyme disease will go through. The stages and emotions can vary from person to person. We all grieve differently and uniquely, which is normal and healthy. Ultimately, the key to true healing involves finally coming to terms with our own personal grief.

This article was first published on ProHealth.com on April 28, 2016 and was updated on February 25, 2020.


Lydia Niederwerfer is a Lyme disease survivor, a freelance blogger, founder of LymeAware, and is passionate about spreading awareness of Lyme disease and other tick-borne illnesses. She is a devoted wife, loving sister, and inspires many of her friends and fellow Lyme Warriors. She also shares the trials and triumphs she has experienced in her journey with Lyme disease on her blog. Lydia has a B.A. in Business Administration, majoring in finance and works within her area school district.

How Not to Quit When You’re Living with Fibromyalgia Pain — 9 Tips to Help You Cope

fibromyalgia pain

When you live with chronic fibromyalgia pain every day, your body screams “QUIT!” How do you manage to keep going despite the pain, fatigue, and discouragements that threaten to overwhelm? Continuing to put one foot in front of the other when experiencing daily pain and exhaustion is not easy, but it is possible when you incorporate some of the following suggestions into your life to help you cope.

9 Tips to Help You Cope with Fibromyalgia Pain

1. First, accept chronic pain as an opportunity to refine and strengthen your character. This perspective enables you to see the good in your situation and can even bring joy back into your life. Because of the difficulty you have endured, you will develop a strength that you would not have had before. You will become more sensitive to the hardships of others. You will be able to help others also experiencing pain and illness because you understand what they are going through.

All of these things would not happen apart from what you are experiencing. When you see the opportunity and value of personal growth because of it, you will be able to cope with it better each day. You will begin to respect the person that you are becoming — someone who is developing the inner strength to keep going, despite the pain and who will not quit in the face of adversity.

2. Next, acceptance of the pain itself will also do wonders for your ability to cope. This does not mean that you are discontinuing fibromyalgia treatment or giving up hope that the pain will go away. This type of acceptance simply means that, while you realize that the pain is not going away today, you also realize that life can still be good, anyway.

To do this, you must decide to take the pain with you wherever you go (because it is going with you whether you like it or not). When you do this, you are making the choice to accept the pain, knowing that it will be with you during the day’s activities. But at the same time, you also choose not to focus on it or let it hinder you from enjoying the activities that you want to continue.

When you do this, you are well on your way to being able to cope when you might otherwise quit. Quitting the activities you enjoy because of chronic pain will result in isolation and depression, and that is no way to live. Choose the activities that are important to you and bring you joy, and keep doing them. These very things will give you a sense of normalcy in your life. Continuing in them will help to prevent devastating losses that can accompany chronic pain and illness.

3. Learn to keep going when you need to keep going, and rest when you need to rest. This is a learning process that requires a balance of pushing yourself when you need to push without pushing yourself past your limits. You will develop a sense of what is too much to do at one time. Allow yourself to rest by carving rest days into your week and rest periods into your days. This will enable you to keep going for the long haul and will prevent you from having to quit because you have overdone it.

4. Be patient with yourself. You will continually fail your personal expectations because you no longer have the same capabilities that you once had. Recognizing and accepting this fact will help you be more accepting of yourself and your situation. Giving yourself grace when you need it will keep you from becoming discouraged with your inabilities. While not an easy lesson to learn, patience is one lesson that will help bring contentment back into your life. Accepting your inabilities does not mean that you give up and quit because you are no longer able to do what you used to do; rather, it helps you know when to stop an activity now, so you can pace yourself and keep living the new life you want to live.

5. Be patient with others, also. Family and friends do not know what chronic fibromyalgia pain feels like, and hopefully they never will know. Some try to understand, but others do not. Unfortunately, some friendships will fall away because some people do not know how to help in situations like this. But some friendships will grow stronger, and it is those people that will stick by you in the days to come. Focus on those friendships.

Try to to make new friendships with people who understand chronic pain. These types of friendships will provide the support that you will need in the future. There are numerous online groups for people with fibromyalgia. Many of the people in these groups are experiencing the exact same things you are dealing with on a regular basis. They will know how to help, support, and guide you as you make future decisions for your care and treatment. They will help to give you the courage to not quit. Over time, you may just develop friendships that will last a lifetime.

6. Ask for help. This is perhaps one of the hardest lessons to learn, but it is essential when living in pain. You may be surprised at the number of people who are willing to help. Unfortunately, sometimes family and friends grow weary of listening to and helping the person in pain. If you are experiencing this situation, try to ask other people for help when you need it. Try not to mention the pain constantly. It is natural to want to talk about what you are experiencing, but you must become aware of when people are weary of listening to you talk about it.

Find support from people who understand chronic pain because they also live with it. It is those people that you will be able to talk with freely about your losses and discouragements. They understand better than anyone. If you are unable to find tangible help that you need, such as assistance with medical bills, food, or transportation to doctors’ appointments, research the community resources in your area that offer help to people living with chronic illness. There are resources available that offer assistance with these types of needs. Government agencies or churches in the area may also be able to provide help.

7. Focus on the good in your life. If you have trouble identifying the good things, ask a friend to help you have a broader perspective. Every day before bed, try to think of three things for which you are thankful. Purposeful gratitude has a way of lifting you up out of the despondency of your situation and enabling you to gain a more positive and hopeful perspective, which ultimately helps you keep going when you would otherwise quit.

8. Deal with bitterness and other negative emotions daily, especially those that make you want to quit. Difficult emotions like anger, bitterness, frustration, fear, anxiety, and depression are emotions that we are forced to deal with all the time when living with chronic illness. It helps to deal with them as soon as they crop up so they don’t become a way of life. If you are dealing with particularly difficult emotions, consider talking to a mental health counselor, life coach, or pastor.

9. Remove “I can’t” from your vocabulary. If you don’t remove those two words from your vocabulary, you will never do anything because chronic pain makes you feel capable of nothing. Most of the time, to be able to accomplish anything, you will have to force yourself to put one foot in front of the other. Remembering that will help you do what you need to do to complete the task at hand.

You will have to repeat this process with yourself before every task you face every day, so reward yourself when a goal is accomplished. For example, after you have successfully made it through a hard meeting at work, take a relaxing bath later after work to reward yourself. Associating rewards with hard daily tasks will help you to complete them.

Ultimately, finding and keeping your eyes on hope will help you most. Hope looks different for everyone, and may take on a different form according to the season of your life. If you have difficulty seeing hope in your situation, ask a friend to help you find your hope. Different fibromyalgia treatment options may provide you with hope. The right friendships and sources of support will help to provide you with hope. Your children or grandchildren are great sources of laughter and hope-filled futures. Hope can also be found in reaching out and helping others. Many find hope in personal faith-based belief systems, which can provide support and help outside of your own resources. Fixing your eyes on hope will give you the strength you need to keep going and help you not to quit during times of adversity in your life.

This article, originally published on May 14, 2016, was updated on February 25, 2020.


Laurie Miller is a wife, mom, nurse, and patient with chronic pain. She enjoys being with family, reading, and blogging at God-livingwithchronicillness.com, where she provides faith-based hope, encouragement, and resources for those living with chronic pain and illness. Many of the principles described in this article were inspired by the book, 5 Habits of a Woman Who Doesn’t Quit by Nicki Koziarz, Lifeway Press, 2016.

An Overview of Lyme disease and Thyroid Health

Many Lyme disease patients experience hypothyroidism — myself included — at some point during treatment. When a person is hypothyroid, the thyroid gland (a butterfly-shaped gland in the front of the neck) fails to produce sufficient amounts of thyroid hormone, which makes it difficult for the body to function optimally.

The thyroid gland regulates specific functions of the body, like metabolism, weight, body temperature, fertility, heart rate, cholesterol levels, and more.

There are many reasons Lyme patients may experience an under-functioning thyroid. A few of those include: environmental toxicity, damage to endocrine tissues as a result of Lyme; medication side effects, an autoimmune condition such as Hashimoto’s thyroiditis or Grave’s disease, adrenal insufficiency, mineral imbalances, and more.

What are the Symptoms of Hypothyroidism?

Symptoms of hypothyroidism may be vague, confusing, and imitate those of Lyme disease. When the condition goes untreated, symptoms may increase in severity. According to the patient-centered website, Stop The Thyroid Madness, some of the symptoms patients reported experiencing included (but weren’t limited to):

  • Less stamina than others
  • Fatigue
  • Feeling weak
  • Long recovery period after any activity
  • Chronic low-grade depression
  • Major depression
  • Often feeling cold
  • Cold hands and feet
  • Less perspiration than others
  • Tendency to put on weight because of low metabolism
  • Constipation
  • Hair Loss
  • Dry skin in general
  • Inability to concentrate
  • Excruciating pain during period
  • Brain fog

How is Hypothyroidism Diagnosed?

To help differentiate thyroid problems from Lyme disease symptoms or the associated coinfections you might be exhibiting, a doctor may order blood tests like a TSH, free T3, free T4, reverse T3, thyroid antibodies, vitamin D, and iron levels. But thyroid lab tests aren’t always accurate. Some physicians and functional medicine practitioners will consider your symptoms along with test results to determine if you’re showing signs of subclinical hypothyroidism (this is where your labs fall within the normal range, but you still have symptoms of a thyroid that’s not performing up to par).

How is Hypothyroidism Treated?

Typically, a standard course of treatment for hypothyroidism may involve a daily dose of replacement thyroid hormones like natural desiccated thyroid (Armour Thyroid, Nature-Throid, or Westhroid) or synthetic versions of the hormones (levothyroxine or liothyronine). Not all medications work for everyone, especially pure T4 hormone preparations, as many with Lyme can’t convert T4 into active T3 hormone, which is what the body needs to function, — so it may take some trial and error to determine which product and dosages work best for your particular thyroid problems.

What Herbs or Supplements Can Support my Thyroid Gland?

To support your body’s thyroid production, some physicians may recommend the following herbs and supplements (As always, please talk to your doctor before adding any of these supplements into your protocol):

1) Multi-vitamin: A multivitamin provides an assortment of vitamins and minerals (like iodine, Vitamin A, B vitamins, selenium, iron, and zinc) to form a foundation of necessary nutrients for thyroid production and overall hormonal health.

2) Adrenal Support Supplements: The thyroid and adrenal glands work in tandem with one another to supply several hormones to your body and give you energy. To adequately address hypothyroidism, your doctor may need to look at treating adrenal insufficiency as well. When the adrenal glands are weak, they can contribute to an underactive thyroid. Although it can be hard to treat chronic Lyme disease symptoms and strike a balance between treating the thyroid and adrenals adequately, doing so can be a critical step to seeing improvements in your health or resolving some of your symptoms.

3) Vitamin D: A 2013 study showed a correlation between hypothyroidism and low vitamin D; the lower the vitamin D levels, the higher the likelihood the survey participants had either hypothyroidism or an autoimmune thyroid condition. Vitamin D needs to be present in adequate amounts to modulate the immune system and for the thyroid hormones to affect the cells of the body. For some Lyme patients, reaching the desired vitamin D level could result in a better functioning thyroid.

A word of caution regarding vitamin D: Many healthcare providers have differing ideas about what the appropriate dosage range is for Lyme patients, so please discuss this with your doctor before using it.

4) L-tyrosine: L-tyrosine is a non-essential amino acid; meaning, your body must obtain it through food, which supports thyroid function. The thyroid gland utilizes both tyrosine and iodine to make thyroid hormone. L-tyrosine may help to support an underactive thyroid, but is not often used as a stand-alone supportive supplement. If you’re taking prescription thyroid medication, you should only include L-tyrosine according to your doctor’s recommendations. Too much of this supplement can trigger anxiety, irritability, insomnia, or other side effects.

5) Omega 3 fatty acids- Omega 3’s, like those found in fish oil, walnuts, and flaxseeds, have been shown in studies to reduce inflammation in the body, balance hormones, improve immunity, and promote a healthy thyroid. Omega 3 fatty acids can thin your blood, so consult with your doctor before taking them if you’re already on a blood thinner.

Bottom line?

Since the thyroid gland is involved in many processes of the body, such as energy production, immune function, and cognitive function, getting your thyroid levels into a desirable range may be key to reducing some of your symptoms and aiding in your recovery from Lyme disease.

This article was first published on ProHealth.com on July 24, 2017 and was updated on February 20, 2020.


ProHealth Editor and Content Manager Jenny Lelwica Buttaccio, OTR/L, is a former occupational therapist and certified Pilates instructor whose life was transformed by Lyme disease, chronic fatigue syndrome, and interstitial cystitis. She is creator of the DVDNew Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health journalist who writes about her journey on The Lyme Road as she continues to pursue her personal healing with the support of her husband and two rescue pups. You can find her on Instagram: @jenny_buttaccio or Twitter: @jennybuttaccio

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A Doctor’s Perspective: Is ME/CFS Really Lyme Disease?

Editor’s Note: David S. Bell, MD is a well-known doctor in the field of ME/CFS treatment and research. Though now retired, Bell was among the first physicians who cared for the group of ME/CFS patients that were part of the original cluster of outbreaks in the mid-1980s. In this interview, Bell uses his expertise to answer the commonly asked question, is ME/CFS really Lyme disease? We’re gateful for Bell’s vast knowledge on a complicated subject both at ProHealth and the ME/CFS community.

Is ME/CFS Really Lyme Disease?

ProHealth: Can Lyme disease result in permanent ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome), even if  the bacteria is no longer detectable? Can the Borellia bacteria that causes Lyme disease also cause ME? Moreover, which is worse: severe ME symptoms, or severe Lyme Disease symptoms?

Dr. David S. Bell: These three questions all revolve around chronic Lyme disease and will be answered differently by every ME/CFS specialist you ask. It is a subject that I had thought about a great deal, and I am aware that is a great deal of contention in the opinions. But with the understanding that we do not know all the answers, I will put forth my opinion:

In 1986 we had, over a two-year period in Lyndonville, New York, a large group of children and adults who came down with what we are now calling ME/CFS, or perhaps SEID (systemic exertional intolerance disorder). Central to this outbreak was a group of children who suddenly became ill in October, 1985. Among their many symptoms was very prominent lymph node tenderness, and after consulting with the New York State Department of Health and the CDC, it was decided to biopsy the armpit lymph nodes in a group of these children. Although none of them had the characteristic Lyme disease rash, it was my thought that they could have Lyme disease, although the appearance of a cluster outbreak argued against this, as did the rare prevalence of Lyme disease in this area. The families signed the permissions, and I explained to the children what was to happen, and one day we performed an axillary (armpit) lymph node biopsy on all eight children.

The tissue was carefully handled and divided into portions to study as much as possible on them. The standard tests were all normal, and routine viral and bacterial cultures were negative. All samples were sent for silver staining, at that time, the “state of the art” to look for Lyme disease, and one lymph node came back positive. Further analysis on this positive sample was not done. Based on this positive, I treated the children with doxycycline which appeared to have a beneficial result. At a later time, a double blind study with doxycycline and placebo did not show benefits. To my regret, none of this was submitted for publication.

In the intervening years, I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism.

This brings us to the underlying infectious organism that causes ME/CFS. I had the good fortune to study persons with post Q fever debility syndrome under the guidance of Professor Barry Marmion when I delivered to him some raw milk I was suspicious of. He had been following abbatoir (slaughterhouse) workers with established Q fever who did not become well with the standard treatment. In 2004 the CDC and Australian government did a prospective study looking to see who became ill following infection with Q fever, Ross River virus (RRV) and Epstein-Barr virus (EBV) in a well-designed and carefully controlled study. One year after infection with one of these agents 6% developed CFS by the Fukuda criteria. Of the many remarkable things in this study was that 6% of those had EBV, 6% with RRV, and 6% with Q fever — three completely different organisms. To me, this meant that many infections could initiate the process of ME/CFS, including infection with the Lyme organism. That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs.

However, in my thinking, ME/CFS is defined by the symptoms, and not the initiating organism. If the disease turns out to be autoimmune, this makes very good sense. It is as if several people got splinters, would we call them different injuries if one person had a maple wood splinter and another oak?

So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. If this is true then the three questions above are easy to answer.

This article was first published on ProHealth.com on October 12, 2015 and was updated on February 18, 2020.


David S. Bell, MD is a well-known doctor in the field of ME/CFS treatment and research. Though now retired, Bell was among the first physicians who cared for the group of ME/CFS patients that were part of the original cluster of outbreaks in the mid-1980s.

 

 

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