Archive for the ‘Psychological Aspects’ Category

6 Traits to Look For in A Therapist When You Have Chronic Lyme

https://rawlsmd.com/health-articles/6-traits-to-look-for-in-a-therapist-when-you-have-chronic-lyme?

6 Traits to Look for in a Therapist When You Have Chronic Lyme

6 Traits to Look for in a Therapist When You Have Chronic Lyme

by Jenny Lelwica Buttaccio
Posted 1/23/20

There are times when the mental weight of dealing with chronic Lyme diseasebecomes too much to handle. Severe symptoms, mounting medical bills, and social isolation can leave you feeling overwhelmed and discouraged. Talking to friends or family can lighten the mental load, but sometimes, you need the help of trained professionals to cope, implement positive or more productive habits, or provide emotional support.

However, choosing a therapist when you’re chronically ill can be an added challenge. Many mental health professionals aren’t aware of the possible mental and emotional toll of tick-borne infections like Borrelia, Bartonella, Babesia. You need a trust-based relationship with your therapist, and the absence of that can hinder your ability to make progress with the stressful circumstances in your life. So how do you find a professional you can trust?

We reached out to two experts, one therapist with an extensive background in Lyme disease and another who doesn’t have any, to find out what characteristics might be helpful when choosing a mental health professional. Here are the six qualities they recommend you look for.

#1 A Familiarity with Lyme Disease

Sandy Berenbaum, LCSW,, has been working with clients who have Lyme disease for more than 28 years. A Lyme-literate psychotherapist and social worker in Connecticut, Berenbaum has also battled Lyme herself since 1984, but she didn’t receive a proper diagnosis until 1990 — and many of her symptoms were psychiatric.

After her diagnosis, Berenbaum sprang into action and began attending Lyme conferences to learn as much as she could about the illness. Even as a social worker, she was unaware that tick-borne diseases could cause mental health issues like depression and anxiety, bipolar mood disorder, psychosis, and more. “I’d been to about three Lyme conferences when it occurred to me that it could be Lyme that’s causing these symptoms,” she recalls.

group of students walking down college campus steps, sun shining over buildings

Berenbaum recalls the story of a young teenage boy, a former honor student, who had been referred to her practice for psychosis and paranoia in 1991. The teenager was on the brink of being admitted to a psychiatric hospital, but then he disclosed to Berenbaum that he had previously participated in volunteer work at a nature center in a Lyme-endemic part of New York. Berenbaum spoke to his mother about the possibility of a Lyme infection and its connection with mental illness, who took her advice to investigate whether or not Lyme disease could be a contributing factor in the decline of her son’s mental health.

“I recommended a doctor who was very Lyme literate. He started treatment, and it was a rocky road because it was just around the time when the doctors were starting to figure out that there were coinfections,” says Berenbaum. “But he was getting better, and when he went on Babesia treatment, he started getting better faster.” Today that 15-year-old teenager is grown up and has a family and a demanding career as a lawyer.

That experience became the catalyst for Berenbaum to dig deeper into the root cause of why people might present with behavioral problems or other mental health problems. Of course, not every incidence of mental health is caused by Lyme. Still, a sudden onset of symptoms, ones that don’t go away with the usual treatments, or multiple psychiatric diagnosis could indicate exposure to Lyme disease or Lyme coinfections.

“When a therapist doesn’t have familiarity with Lyme, they won’t really understand how tremendously fatiguing the illness is,” says Berenbaum. That could lead to a patient feeling lonely, misunderstood, and unsupported, and they can become soured on therapy at a time when they need it most.

#2 A Willingness to Learn

While it would be great to only work with a Lyme-knowledgeable mental health practitioner, the reality is that not everyone has access to one. Instead, many of us have to use the resources that are within reach for reasons such as insurance reimbursement, the urgency of the matter, or proximity. Fortunately, that doesn’t mean you’re out of luck.

Amanda Stephenson, LCSW, a licensed clinical social worker in Lombard, Illinois, doesn’t have a history of working with clients with acute or chronic Lyme disease, however, she strongly feels that any therapist who’s trying to build a therapeutic rapport would benefit from doing some research when treating someone with the illness. It starts with being open to a new patient’s explanation of Lyme disease, she notes — but that also requires you, the patient, to show up prepared to do some friendly educating.

therapist holding medical chart, discussing it with patient, zoomed in on hands

“I would recommend bringing resources on Lyme to the first session, because any initial session is primarily information gathering and assessment,” Stephenson says. “When patients can provide as much background information as possible, it is helpful to the therapist in understanding their needs.”

Stephenson also suggests explaining your current treatment plan for Lyme and any mental health side effects you might have already identified. For instance, if you’ve noticed you feel depressed or anxious after taking a particular medication or treatment, information about Herxheimer reactions or detoxification strategies could be useful information to share. That way, the therapist can begin to learn how Lyme symptoms can ebb and flow from one day to the next.

#3 Offers a Preliminary Phone Consultation

You’ve probably been through many different kinds of treatments and seen several doctors in the process, so no doubt the idea of relaying an extensive medical historyto someone new who might not be open to hearing it is exhausting. So before you have your first official session, ask about a free phone consultation — the majority of therapists offer them — to get a feel for whether they are a good match for you and your needs.

zoomed in photo on women hands dialing on a cell phone

“I do a half-hour to 45-minute phone intake that I don’t charge for; I want to make sure that it’s a good fit between the person that’s calling and me,” says Berenbaum. “And by good fit I mean, am I going to be able to help this person? And how are they going to know, before they decide to start with me, that there’s a good chance I’m going to be able to help?”

During the phone consultation, Berenbaum gathers some basic information, explains her problem-solving approach to working with patients, and helps them understand that she and the patient work together as a team to define the problems. Typically, phone consults are informal and won’t serve as a therapy session. But it’s a way for you to get a sense for a therapist’s knowledge of Lyme and willingness to learn before investing your time and money.

#4 Sympathy Toward Invisible Illnesses

For most people with Lyme disease, their symptoms and suffering might not show on the exterior, and that invisibility can result in disbelief and skepticism among peers, family members, and the medical community. Indeed, it’s not uncommon for doctors or other healthcare professionals to question whether the illness is real, or if it’s all in a patient’s head.

The ramifications of this doubt can be risky for patients’ well-being. Primarily, they may be less likely to seek help for mental health services at all because they’ve come to mistrust the very systems that offer them. Is there a way through it all?

Blurred portrait of psychiatrist consulting patient, focus on hourglass in foreground

“I think it’s important to voice this concern upfront with the therapist. Exploring previous negative experiences is imperative in establishing a positive therapeutic relationship with any provider,” says Stephenson. “Therapy, particularly from a social work perspective, is supposed to be a helping relationship, so the clients are considered to be equal partners in the process.”

Stephenson adds that it would be helpful to sign a HIPPA release form, allowing the therapist to talk with the medical providers who are involved in your treatment process to gain insights into what you have been through.

#5 Has A Network of Referrals

Sometimes mental health doesn’t improve quickly or significantly enough with therapy alone, and there may come a time when you need a referral to a psychiatrist with prescribing powers. For that reason, when you choose a therapist, it’s beneficial to pick one who has trusted relationships with at least a couple of psychiatrists. You might never take advantage of those relationships, but you don’t want a lack of them to ever become an obstacle to your healing process.

“A lot of Lyme patients can’t find a psychiatrist or a psychiatric nurse practitioner who knows Lyme or will treat them with psychopharmacology,” says Berenbaum.. “I’m not saying psychopharmacology is for everybody, but if you decide you need it, you’ll want to know who to go to,” explains Berenbaum. She has a ready list of psychiatrists she can recommend who she knows are amenable to Lyme patients’ needs and are knowledgeable about the range of treatment options.

#6 A Flexible Cancellation Policy

Sometimes, the unpredictable nature of Lyme is such that you don’t always know how you’re going to feel on the day of an appointment. Due to symptoms beyond your control, you may have to cancel with super-short notice — a move that can cost you a cancellation fee or even the full price of a session at most therapists’ offices.

Because of her familiarity with Lyme, Berenbaum doesn’t charge a cancellation fee of any kind, though she appreciates when a patient can provide her with at least 45 minutes notice. “I have chosen to work with a whole population of sick people, so I think it would be wrong of me to charge for cancellation when you’ve had a bad night or your brain isn’t working well,” she says.

Black woman with a headache, placing a hand on her head while resting on the couch

Berenbaum might seem like a unicorn in this matter, but there are other therapists out there with flexible cancellation policies. For instance, one therapist in Illinois who works with chronically ill patients told us she allows her patients to text a cancellation notice by 7 PM the evening before the scheduled session without a fee. (Most therapists require 24-48 hours or more of advance notice.) Those few additional hours allows patients to see how their symptoms wax and wane and guageif keeping their next-day appointment might be feasible after all.

Of course, it’s important to be respectful of a mental health professional’s time and livelihood, and to consider the other patients who might benefit from your open time slot. But it doesn’t hurt to explain your situation and how your symptoms fluctuate from day-to-day, and to ask about the possibility of a flexible cancellation policy. You might find that some people are more accommodating than others.

Some final words of wisdom: When choosing a therapist, find one you believe can become a source of strength and support for you, as opposed to another source of stress. And if ever you feel invalidated by your therapist, it’s perfectly okay to move on to someone else.

“I believe that my client and I form the beginning of a team,” says Berenbaum. “My first goal is to give the client hope, whether it’s a mother, whether it’s a kid, whether it’s an adult — they need hope.”

Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.

Learn About Dr. Rawls’ Herbal Protocol »
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Excerpt: 

Media outlets recently reported about a 21 year old Ridgefield male who was charged with assault on Friday, November 15.

We have since learned of this man’s plight and offer our apologies for any insensitivity on our part. This 2016 RHS grad has been dealing with the very serious, complicated, and often misunderstood symptoms of Lyme Disease and has been diagnosed with Bartonella and Babesia, both co-infections of the disease. We have also learned that his actions were the direct result of manifestations of this horrific illness. 

Mainstream medicine is still in the Dark Ages and hasn’t a clue about the psychiatric presentations of Lyme/MSIDS.

https://madisonarealymesupportgroup.com/2019/09/17/ignoring-psychiatric-lyme-disease-at-our-peril/

https://madisonarealymesupportgroup.com/2019/08/11/the-unfortunate-connections-between-lyme-disease-mental-illness/

In this claims report, the #1 treatment sought by Lyme patients was psychological care:  https://madisonarealymesupportgroup.com/2019/12/14/trends-and-patterns-in-lyme-disease-an-analysis-of-private-claims-data/

Category:

Activism, Lyme, Psychological Aspects

Dear Lyme Warrior…Help!

https://globallymealliance.org/dear-lyme-warriorhelp-10/

lyme warrior

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Below she answers some that she’s recently received. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

How can I keep anxiety under control while waiting for test results?

Waiting is one of the hardest parts of being sick. You are waiting for results, waiting for medication to work, waiting to get your life back on track. Despite the label “patient,” it can be very hard to practice patience when you have a complex illness such as Lyme.

The important thing to remember with tick-borne illness is that testing is faulty and cannot be fully relied upon as the sole indicator of whether you have Lyme disease. Specialized testing can help support clinical diagnosis, but that’s a judgment call made by your doctor, who needs to take your symptoms and full medical history into account. Tests for inflammatory and immune markers can help your doctor make an accurate assessment. If you are seeing a good Lyme Literate Medical Doctor (LLMD) and feel comfortable with their diagnosis, don’t hang too much on test results.

It’s also critical to face the fact that tick-borne illness can physiologically cause anxiety. The Lyme bacteria can get into your brain and cause symptoms of anxiety on top of the natural worries you may already be having about how your illness is affecting you. Be sure to tell your doctor if you are experiencing psychological symptoms (including depression, confusion, an inability to concentrate) that may affect your treatment plan. I also highly recommend talking to a therapist who understands chronic illness. Doing so really helped me manage my own anxiety.

How can I help someone who has severe anxiety about treatment, and is resisting it?

As hard as it is for Lyme patients to deal with anxiety, it can be just as hard for caregivers to watch their loved ones become fearful and, at times, irrational. Lyme can cause inflammation in the brain, which can lead to all sorts of out-of-character behavior. Patients who were once calm and cheerful may become nervous, obsessive, angry, and confused. They may not be able to make sense of treatment options and may feel overwhelmed by all the conflicting information being thrown at them from health care professionals and the internet.

It’s important for Lyme patients to know that they are not alone. First and foremost, reassure your loved one that you are on their team. Validate their feelings and concerns rather than arguing against them. For example, instead of saying, “You just need to do x,” tell someone, “I hear your fears about treatment. I have fears, too.”

Then, demonstrate that you understand the risks and benefits of treatment options by showing insight into their suffering. In order to do this, read books and articles about the lived experience of tick-borne disease. This way the patient will know your advice is coming from a well-informed place. Offer to accompany the patient to one or more doctor’s appointments, so that you can help them make sense of what’s being said.

Finally, you may need to be direct with the patient, though in a loving way. If someone had said to me,

“I think the illness is affecting your ability to make this decision, and I want to help you because I want you to get well,” that would have really reassured me.

You might even bring up the patient’s anxiety when you’re together at the appointment, to get the doctor’s advice—just make sure you ask the patient about whether he or she is alright with this. You could also offer to go to therapy appointments with them to talk about both of your concerns and the best methods for communication.

Do all Lyme symptoms go away if you kill off the bacteria, or do some symptoms remain?

The answer to this question is different for every patient. It depends on how quickly you’re diagnosed, how well you respond to treatment, whether you are also battling co-infections, and whether the bacteria has crossed into the central nervous system. Many patients who are diagnosed immediately after a tick bite and take a standard course of antibiotics get fully well. Some 20%, though, develop Post Treatment Lyme Disease Syndrome (PTLDS) which means symptoms persist after treatment. Still others enjoy remission with periods of flare-up.

All it takes is one dormant Lyme bacterium (spirochete) to start replicating for the infection to return. This is more likely in long-term, complex cases like my own, which took eight years to diagnose. I have Lyme plus two tick-borne co-infections. My Ehrlichia seems to have gone away completely, while Lyme and babesia still flare-up. It’s babesia that still gives me the most trouble. However, all of my symptoms are greatly decreased and are far more manageable than they once were.

Since no two cases of tick-borne illness are alike, the fact that some of my symptoms have persisted doesn’t mean that yours will. Here is what I can tell you for sure: under the care of a good LLMD, you may not be cured, but your life can get much, much better.

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

 

 

Category:

Activism, Lyme, Psychological Aspects, Uncategorized

Antibiotics Could Be Promising Treatment For Form Of Dementia

https://neurosciencenews.com/antibiotics-dementia-15439/

Antibiotics could be promising treatment for form of dementia

Neuroscience NewsNEUROSCIENCE NEWS
FEATUREDGENETICSNEUROLOGYNEUROSCIENCEOPEN NEUROSCIENCE ARTICLES3 MIN READ
Summary: Gentamicin and G418, two aminoglycoside antibiotics, were effective at correcting genetic mutations associated with a specific form of frontotemporal dementia. The findings are promising for the treatment of frontotemporal dementia.Source: University of Kentucky

Researchers at the University of Kentucky’s College of Medicine have found that a class of antibiotics called aminoglycosides could be a promising treatment for frontotemporal dementia.

Results of their proof of concept study, which was a collaborative effort between UK’s Department of Molecular and Cellular Biochemistry and the University of California San Francisco’s Department of Pathology, were recently published in the journal, Human Molecular Genetics.

Frontotemporal dementia is the most common type of early onset dementia. It typically begins between ages 40 and 65 and affects the frontal and temporal lobes of the brain, which leads to behavior changes, difficulty speaking and writing, and memory deterioration.

A subgroup of patients with frontotemporal dementia have a specific genetic mutation that prevents brain cells from making a protein called progranulin. Although progranulin is not widely understood, its absence is linked to the disease.

A group led by Haining Zhu, a professor in UK’s Department of Molecular and Cellular Biochemistry, discovered that after aminoglycoside antibiotics were added to neuronal cells with this mutation, the cells started making the full-length progranulin protein by skipping the mutation.

“These patients’ brain cells have a mutation that prevents progranulin from being made. The team found that by adding a small antibiotic molecule to the cells, they could ‘trick’ the cellular machinery into making it,” said Matthew Gentry, a co-author of the study and the Antonio S. Turco Endowed Professor in the Department of Molecular and Cellular Biochemistry.

The researchers found two specific aminoglycoside antibiotics – Gentamicin and G418 – were both effective in fixing the mutation and making the functional progranulin protein. After adding Gentamicin or G418 molecules to the affected cells, the progranulin protein level was recovered up to about 50 to 60%.

These results could be promising to drug development. Currently, there are no effective therapies for any type of dementia.

This shows pills

After this preclinical proof of concept study, the next step is to study the antibiotics’ effects on mice with the mutation that causes frontotemporal dementia, Zhu says. Another focus is to possibly develop new compounds from Gentamicin and G418 that could be safer and more effective. Although Gentamicin is an FDA-approved medication, its clinical usage is limited as it is associated with a number of adverse side effects.

“If we can get the right resources and physician to work with, we could potentially repurpose this drug. This is an early stage of the study, but it provides an important proof of concept that these aminoglycoside antibiotics or their derivatives can be a therapeutic avenue for frontotemporal dementia,” said Zhu.

ABOUT THIS NEUROSCIENCE RESEARCH ARTICLE

Source:
University of Kentucky
Media Contacts:
Elizabeth Chapin – University of Kentucky
Image Source:
The image is in the public domain.

Original Research: Open access
“Frontotemporal dementia nonsense mutation of progranulin rescued by aminoglycosides”. Haining Zhu et al.
Human Molecular Genetics doi:10.1093/hmg/ddz280.

Abstract

Frontotemporal dementia nonsense mutation of progranulin rescued by aminoglycosides

Frontotemporal dementia (FTD) is an early onset dementia and is characterized by progressive atrophy of the frontal and/or temporal lobes. FTD is highly heritable with mutations in progranulin accounting for 5-26% of cases in different populations. Progranulin is involved in endocytosis, secretion and lysosomal processes, but its function under physiological and pathological conditions remains to be defined. Many FTD-causing nonsense progranulin mutations contain a premature termination codon (PTC), thus progranulin haploinsufficiency has been proposed as a major disease mechanism. Currently, there is no effective FTD treatment or therapy.

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For more:  https://madisonarealymesupportgroup.com/2019/12/13/the-link-between-lyme-disease-and-dementia/

https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/

https://madisonarealymesupportgroup.com/2019/06/22/dementia-from-illness/

https://madisonarealymesupportgroup.com/2019/03/10/baseballs-tom-seaver-diagnosed-with-dementia/

Category:

Psychological Aspects, research, Treatment

What Causes Alzheimer’s? Not Toxic Amyloid, New Study Suggests

https://www.medicalnewstoday.com/articles/327412.php#1

What causes Alzheimer’s? Not toxic amyloid, new study suggests

Many researchers have argued that the accumulation of toxic beta-amyloid in the brain causes Alzheimer’s. However, a new study offers some evidence contradicting this sequence.

researcher assessing brain scan
New research is questioning the predominant hypothesis that a buildup of beta-amyloid causes Alzheimer’s disease.

Alzheimer’s disease affects over 5.5 million people in the United States and millions more around the globe.

Yet, researchers are still at a loss as to why this condition — which is characterized by memory impairment and many other cognitive problems — occurs in the first place. And until they fully understand the cause, investigators will remain unable to devise a cure.

So far, the prevailing hypothesis among experts has been that the excessive accumulation of a potentially toxic protein — beta-amyloid — in the brain causes Alzheimer’s.

Researchers have argued that beta-amyloid plaques disrupt the communication between brain cells, potentially leading to cognitive function problems.

Now, a new study from the University of California San Diego School of Medicine and the Veterans Affairs San Diego Healthcare System suggests that while the buildup of beta-amyloid has associations with Alzheimer’s, it may not actually cause the condition.

In a study paper that appears in the journal Neurology, the researchers explain what led them to reach this conclusion.

“The scientific community has long thought that amyloid drives the neurodegeneration and cognitive impairment associated with Alzheimer’s disease,” says senior author Prof. Mark Bondi.

He notes that “[t]hese findings, in addition to other work in our lab, suggest that this is likely not the case for everyone and that sensitive neuropsychological measurement strategies capture subtle cognitive changes much earlier in the disease process than previously thought possible.”

What comes first?

In their study, the researchers worked with a total of 747 participants with different levels of cognitive health. All of the study participants agreed to undergo neuropsychological assessments, as well as PET and MRI brain scans.

Of the participants, 305 were cognitively healthy, 289 had mild cognitive impairment, and 153 displayed markers of what the investigators call “objectively-defined subtle cognitive difficulties (Obj-SCD).”

Experts define mild cognitive impairment as a state of cognitive impairment that is more severe than what one would normally experience with age, but not yet severe enough for a dementiadiagnosis.

However, mild cognitive impairment does develop into dementia in a significant number of people.

But what are Obj-SCD? In their paper, the investigators define them as “difficulties or inefficiencies on some sensitive cognitive tasks even though the overall neuropsychological profile is in the normal range.”

That is, they are a measurement of experienced, subtle cognitive functioning problems that occur in the absence of any visible signs of brain or psychological issues. To find out whether someone is experiencing Obj-SCD, researchers assess, among other factors, how efficiently that person can learn and retain new information.

Previous research has suggested that individuals with Obj-SCD are at a higher risk of mild cognitive impairment and forms of dementia.

In the current study, Prof. Bondi and the team found that beta-amyloid built up at a faster rate in the participants with Obj-SCD compared with those who were deemed cognitively healthy. Moreover, brain scans of people with Obj-SCD showed that these individuals experienced a thinning of brain matter in a region called the entorhinal cortex.

Past research has shown that the entorhinal cortex decreases in volume in people with Alzheimer’s disease. This is significant because this brain region plays a role in memory and spatial orientation.

The researchers also found that while people with mild cognitive impairment had higher quantities of beta-amyloid in their brains at the beginning of the study, this protein did not seem to build up any faster in these participants than it did in cognitively healthy individuals.

But why do the current findings potentially contradict a decades-old hypothesis about the development of Alzheimer’s? Prof. Bondi explains:

“This work […] suggests that cognitive changes may be occurring before significant levels of amyloid have accumulated. It seems like we may need to focus on treatment targets of pathologies other than amyloid, such as tau, that are more highly associated with the thinking and memory difficulties that impact people’s lives.”

“While the emergence of biomarkers of Alzheimer’s disease has revolutionized research and our understanding of how the disease progresses, many of these biomarkers continue to be highly expensive, inaccessible for clinical use, or not available to those with certain medical conditions,” adds first author Kelsey Thomas, Ph.D.

The new study’s findings could help change that by refocusing the research approach on more subtle markers of Alzheimer’s, such as those assessing for Obj-SCD.

“A method of identifying individuals at risk for progression to [Alzheimer’s disease] using neuropsychological measures has the potential to improve early detection in those who may otherwise not be eligible for more expensive or invasive screening,” says Thomas.

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Category:

Alzheimer's, Psychological Aspects, research

2020 Vision for Lyme Warriors

https://globallymealliance.org/2020-vision-for-lyme-warriors/

Woman looking back

by Jennifer Crystal

HERE ARE SOME THINGS I NOW KNOW FOR SURE, THINGS I WISH I’D KNOWN, LOOKING BACK ON MY LYME JOURNEY

As the saying goes, “hindsight is 20/20.” It’s easy for us to look back from the vantage point of experience and say, “I wish I’d done X,” or “If only I could have known Y.” It isn’t always so easy to see those options when we’re living our daily lives, making real-time decisions based on the information we have at the moment.

When I look back across my 20-year health journey, I recall many points of confusion, fear, and desperation. I remember the mixed messages from health professionals. I think back on the skepticism from those who were supposed to help me. I recollect the disbelief in myself, in what my body was telling me. I know so much now that I wish I’d known then. And while I can’t change my past, I hope I can use it to help make another patient’s health journey a little easier.

Here are some things I now know for sure, things I wish I’d known at various crucial points of my own journey:

I really was sick.

When I first developed a rash, and then hypoglycemia, and then a debilitating flu at age 19, I was not going crazy. I was not stressed. I was not run down. I did not need to exercise more. The symptoms were not psychosomatic. I had been bitten by a tick and was sick with real physical illnesses, namely Lyme and two of its co-infections Babesia and Ehrlichia. It would be another eight years until I was properly diagnosed. That delay was so extensive in part because of the disbelief or just plain ignorance of many health professionals. Naturally, I believed them too.

If I had been accurately diagnosed promptly, my whole life would have been different.

I was bitten by a tick in 1997, and perhaps again in 2001 or 2002, but I wasn’t tested for tick-borne diseases until 2005. Testing is faulty now and was even faultier then, so even if I’d been tested for Lyme or co-infections, I might have gotten a false negative and been told I was well.

But I also might have gotten a true positive. If I’d seen a Lyme Literate Medical Doctor (LLMD)—or even known that such a specialist existed then—they might have made a clinical diagnosis right away. I might have taken just three weeks of recommended antibiotics and been fine.

Instead, I developed chronic infections that, 20 years later, are in remission but by no means cured. I went through years of intense antibiotic therapy, including intravenous antibiotics, and I’m still on medications to this day. I don’t live my life with regret, but I would regret it if you were in the same position and didn’t learn from my story. If you discover a tick bite, or have symptoms of tick-borne illness, you don’t have to suffer for years without treatment. You can find a good LLMD in your area and get a head start on your return to wellness.

If a loved one has symptoms and doesn’t know about Lyme disease, or doesn’t know how to find a doctor, offer to go through the process with them. Remember that Lyme patients are often frightened, anxious, and even neurologically impaired. They need real help when it comes to navigating their path.

Lyme Literacy improves over time.

I don’t blame the many health practitioners who missed my case in 1997, because tick-borne disease wasn’t on the radar then. I believe that if I presented now with the same symptoms as I did in 1997, at least one of those practitioners would think about the possibility of tick-borne disease. Thanks to media coverage, increased awareness and education efforts, and, unfortunately, the expanding number of cases, Lyme literacy has greatly improved in the last 20 years. That should give us hope for the future.

Healing is not linear.

It took me a long time to get diagnosed. Therefore it took me a long time to get well. Along the way, there were many bumps in the road, and even some large potholes. Once I was diagnosed, I figured I’d take medicine and slowly get better, as one would from bronchitis or a sinus infection. But that’s not how it works with tick-borne disease. It can take a while for your LLMD to figure out the best treatment protocol for you since each case is unique. You will likely experience a nasty Herxheimer reaction, which means you will feel worse before feeling better. As I discussed in my Gratitude for the Long Game post, the journey through tick-borne disease is an up and down process like a spiraling helix that ultimately stretches towards wellness.

Not everyone will get it.

Lyme patients often spend time and energy they don’t have trying to convince doctors and loved ones that they really are sick. Once they are diagnosed, they may feel a sense of validation, but that doesn’t mean that everyone will immediately understand what they’re going through. I still knew people who didn’t believe me, those who thought my doctor was a quack, those who thought I just needed to “push through it.” These people didn’t understand that Lyme is complicated and comes in myriad forms; they didn’t want to hear about chronic illness and asked, “Aren’t you over that yet?”

At first, I wasted a lot of energy trying to convince these people of the truth. But eventually I realized, I don’t need them to understand. The only people who really need to get it are my doctor and me. I’m focused now on the people in my life who do want to understand, the folks who have offered unconditional support. I stopped worrying about the others. I don’t need their approval.

I came to understand that many of those people were well-intentioned, but were reacting out of fear or ignorance. Some of them did come around. My own family’s understanding of tick-borne illness blossomed alongside my own as they eventually read the books, watched the documentaries, attended the conferences, and accompanied me to doctor’s appointments. So while I have no more time to lavish on the doubters, I do hope that one day they will see the light.

No two cases are alike.

Every case of tick-borne disease is different; that means every treatment protocol is different, too. Patients write all the time to ask me what particular medication I took. But it doesn’t help for me to say which medications I’ve taken. Fact is, I’ve used many different combinations over time but never a single magic cocktail. That’s because what worked for me might not work for you, and vice-versa. It can be easy to think, “Well antibiotic X worked for her in five weeks, so it should work for me too.” Or, “My friend got better from Lyme in one month, so my son should, too.” It’s imperative to remember that each case is unique. Be patient with yourself, or with your loved one, knowing that each body heals at its own pace.

It gets better.

When I was bedridden with exhaustion, migraines, aching joints, and insomnia, I never, ever believed I could have gotten as well as I have. I am heading into the new decade still managing my tick-borne illnesses, but I’m doing it in the context of a full and happy life. Reflecting on my past has given me gratitude, wisdom, and resilience, and those tools will help me see clearly as I step into 2020. May your vision also be clear, and your new year bright!

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

 

 

 

 

 

 

 

Category:

Activism, Lyme, Psychological Aspects