On Turning 40 and Getting Published on Prevention.com

Two days ago, I turned 40. While my life looks nothing like I’d imagined, some wonderful opportunities have emerged through my battle with Lyme disease. One of those opportunities happened today, when an essay I wrote was published on Prevention Magazine online. This story details my hope to return to fitness in my 40’s while I continue to battle a chronic illness. My life has changed as a result of a debilitating illness, but I’m grateful to share small victories like this with you. Here’s my essay, Chronic Illness And Lyme Disease Dominated My Youth—Now I’m Determined To Get Fit At 40. (As a side note, I can’t believe I’m 40!!!)

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What I Use to Manage Herxheimer Reactions

(Please Note: This article first appeared on prohealth.com on March 21, 2017)

It was sunsets that  taught me that beauty  sometimes only lasts  for a couple of moments,  and it was sunrises that  showed me that all it  takes is patience to  experience it all over  again. ~ A.J. Lawless, “Patience”

It was sunsets that taught me that beauty sometimes only lasts for a couple of moments, and it was sunrises that showed me that all it takes is patience to experience it all over again.
~ A.J. Lawless, “Patience”

Let’s face it—no one wants to experience the dreaded Herxheimer reaction (AKA “herx”) when undergoing Lyme treatment. We’ve all heard horror stories about them, and for some Lyme patients, the thought of having to endure this reaction on top of disabling Lyme symptoms is too much to bear. In some instances, a patient may choose to delay or reject treatment altogether to avoid these unpleasant symptoms.

What is a Herxheimer reaction?

In his online book called, The Treat Lyme Book, Dr. Marty Ross states, “a die-off reaction can occur when treating the Lyme germ, some co-infections, and yeast. It occurs as bacteria or yeast die during antibiotic treatment. It is common to have Herxheimer die-off reactions when starting herbal anti-microbials or antibiotics when treating Lyme. These reactions can also occur when new antibiotics are introduced into a treatment.”

As bacteria or yeast die off, the body releases proinflammatory proteins (known as cytokines) in response to an influx of toxins. While some cytokine activity bolsters the immune system to fight infections, too many of these chemicals can have adverse effects. An overabundance of cytokines in the body leads to pain, fatigue, a suppressed immune system, cognitive issues and brain fog; essentially, a worsening of many of the symptoms of Lyme disease.

But are you powerless against toxins, increased inflammation, and excess cytokines running bonkers through your body? No, you’re not! Using a variety of supplements, lifestyle changes, and detox methods, you can lessen herxes and support your body during treatment. Over the years I’ve tried many things, and I’d love to share with you the ones that have helped me the most during the last three-and-a-half-years of my treatment.

1. Activated charcoal- In a previous article entitled, A Quick Guide to Seven Popular Toxin Binders  I mentioned the benefits of this low-cost supplement for reducing the body’s inflammatory responses to toxins. As someone who tends to be sensitive to many supplements and medications, I’ve found activated charcoal to be a gentler approach to binding adverse substances and facilitating their removal from my body.

Consult with your doctor before using any toxin binders, as they must be taken a few hours away from other medications, herbs, or supplements to prevent these remedies from getting absorbed, as well.

2. Glutathione- Glutathione is referred to as the body’s master antioxidant, and it helps to support the liver through the detoxification process. I’ve used this supplement in an oral form, called liposomal glutathione, and in an intravenous drip. Although this supplement can be a bit pricey, it’s one of my favorites for mitigating the effects of a herx, and it improves my energy, decreases brain fog, and helps me to sleep better at night.

3. Infrared sauna treatments- In the book, Beating Lyme Diseasechiropractic doctor, Dr. David Jernigan (2008) writes, “In the realm of assisting chronic or frequently occurring infectious illness, infrared sauna therapy is a vital part of any good treatment program. This is because of its ability to detoxify the body of heavy metals and toxins that are locked up in the fat cells.” (p. 183).

An infrared sauna is different from the steam saunas you might be familiar with at your local gym or spa. The temperature range for an infrared sauna is typically 110-130 degrees (depending on the machine), which is significantly less than a steam sauna. Infrared saunas heat the body from the inside out, allowing the heat to penetrate more deeply. A 30-minute sauna session improves circulation, reduces pain, helps you feel calmer, and assists your body with detoxification. Before investing in an infrared sauna, please consult with your health care provider. There may be some instances where sauna sessions are contraindicated.

4. Epsom salt baths- Magnesium sulfate, the primary mineral in Epsom salts, has a relaxing effect on muscles and the nervous system, and is an inexpensive way to diminish herxes. Not only does this mineral-rich salt reduce pain and inflammation, but it also boosts the detoxification capabilities of both the skin and the liver thanks to the compound sulfate. Sulfate draws out toxins through the skin and cleanses the liver by enhancing the production of bile. Since Epsom salts can lower blood pressure, you may want to begin with a foot bath to gauge how you feel using this method of detoxification.

5. Exercise as tolerated- While exercise is probably the last activity you feel like doing when you’re experiencing a herx, it can be one of the best ways to reduce your symptoms when done appropriately. Your lymphatic system–a network of tissues, organs, and fluid that eliminates waste and disperses immune cells throughout your body– is stimulated through movement and contractions of your muscles.

There are two important points to remember when incorporating exercise into your treatment protocol: First, don’t overdo it. If you feel exhausted after an activity, you’ve done too much, and you need to scale back. Second, don’t engage in strenuous aerobic activity, as this can suppress the immune system for up to 24 hours following exertion. When beginning an exercise regimen, you may need to consider seeing a physical therapist or a trainer, so you can have an individualized program to rebuild your strength and stamina without pushing yourself to the limit.

These are the things that I use to improve my die-off symptoms. There are many additional options, so, with some trial and error, you’re likely to find something to support you through this challenging aspect of treatment.

References: 

Burrascano Jr., J. (2008) Advanced Topics In Lyme Disease: Diagnostic Hints And Treatment Guidelines For Lyme And Other Tick Borne Illnesses. Retrieved from http://www.lymenet.org/BurrGuide200810.pdf

Jernigan, D. (2008). Beating Lyme Disease. Wichita, KS: Somerleyton Press.

Ross, M. (2014, November 8). Herxheimer Die-Off Reaction: Inflammation Run Amok. Retrieved from
http://www.treatlyme.net/treat-lyme-book/herxheimer-die-off-reaction-inflammation-run-amok/

A Big Thank You Ravishly

Today, my first long-form essay went live on Ravishly. I was nervous and scared to write this piece, and I was flooded with an unexpected range of emotions. How could I write about the most challenging and dark time in my life? Well, I persevered, chipping away at the piece over a two-week period. I am very proud to say I did it! I was able to share my story and a story that mirrors the lives of so many other Lyme patients. I’m so proud to have accomplished this, and I hope you’ll enjoy reading it and find some hope in the story.

A big thank you to Ravishly for allowing me to write this cathartic piece!

Without further adieu, click here to read I’ve Never Met the Nurse Who Saved My Life.

5 Tips to Treat Lyme Disease When You’re on a Budget

(Please note: This post first appeared on ProHealth on February 27, 2017.)

Image made available by TaxCredits.net

Image made available by TaxCredits.net

 

Recently, I received a distressing message from a fellow Lyme patient named Amy, whom I’ve never met. She had reached out to me on my blog expressing her dismay over the ongoing medical costs to treat her illness. “We are financially drained, nothing left,” she wrote. “I still need treatment.” Amy wondered how I was able to afford the expense of constantly battling Lyme.

Unfortunately, Amy’s message highlights widespread issues among patients when trying to recover from Lyme disease–a lack of finances and other resources to continue the journey toward regaining our health. With dwindling bank accounts, we are often forced to decide between seeking quality treatment, paying our rent or mortgage, or putting food on the table.

Over the years, I’ve developed a few strategies to decrease the pressure of managing an ailment with a hefty price tag. Here are five tips to treat Lyme disease when you’re on a budget.

1.See if you qualify for financial assistance

Here’s a list of five organizations I found useful for receiving accurate testing, treatment, and medications.

 

  • Lyme-Tap [http://www.ilads.org/campaign/lyme-tap.php] provides need-based financial assistance to people for initial Lyme-related testing. Resources are available on a first come, first served basis and preference is given to children under 18 years of age. Please note: Lyme-Tap doesn’t pay for insurance deductibles.


  • RxAssist [http://www.rxassist.org/]- is a curated database of information from pharmaceutical companies and additional sources to help patients get medications at a reduced cost. Patients may qualify for this program if they meet the income guidelines and have no prescription drug coverage. In hardship circumstances, an insured person may still qualify for assistance.


  • Bay Area Lyme Foundation Tick Test [http://www.bayarealyme.org/lyme-disease-prevention/tick-testing/]- performs free testing to determine if a tick a person has encountered is an infected or uninfected tick. The service is offered as part of a larger data-collection project to help scientists locate areas where Lyme disease is most common. This program is for informational purposes only and is not used for the diagnosis or treatment of tick-borne infections.


  • LymeLight Foundation [https://lymelightfoundation.org/grants/]- offers grant opportunities to children and adults through age 25. An applicant must be under the care of a Lyme literate health care provider and be a U.S. resident. The maximum lifetime grant awarded to a patient is $10,000.


  • GoodRx [https://www.goodrx.com/]- Many people aren’t aware that the cost of medications can vary significantly from one location to another. GoodRx compares prices and discounts from pharmacies all across the country so that patients can locate the lowest prices for their prescriptions. These discounts and coupons can be used whether you have insurance or not, and GoodRx was a lifesaver for me whenever I had gaps in my health care coverage.


2. Understand what your insurance plan covers

Unfortunately, you might not be able to stay within your insurer’s network to see a Lyme specialist. But, are you aware you may be able to submit your bill to the insurance company for partial reimbursement or to meet your out-of-network deductible? Small savings add up over time and can make or break your ability to sustain treatment. Moreover, some private insurers now reimburse for Skype appointments, and this could offset travel expenses if your doctor isn’t local.

In addition to doctor visits, check which medications your insurance will pay for in advance. Not long ago, I was surprised to learn that my plan covered all but $10 of a $1200 drug. However, it didn’t cover any of the cost of a $200 antibiotic. Knowing which medications my insurance did and didn’t cover, allowed me to examine the discount coupons I mentioned previously, other prospective drugs, or herbal medications to see what was more affordable for me.

3. Pare down your supplements

In a world with unlimited financial resources, we would be able to purchase every supplement our doctor recommends. Sadly, for many of us, this isn’t realistic. After several years of exhausting money on supplements that didn’t work for me, I began asking my doctor to pick her top two supplement recommendations for my treatment protocol. By doing this, I was able to tell which supplements were helping me and which ones were ineffective. Over time, I’ve slowly created an essential, supportive list of supplements that’s within a price range I can afford.

4. Resist the urge to hop on a treatment bandwagon

As you watch others invest in expensive endeavors, it’s easy to fear you’re missing out on a potentially life-changing treatment. I’ve been in that position (heck, I’m still in that position). Over the years, I’ve learned to watch and ask others how they’re doing with their treatments before jumping into something new. Although the wait is painful at times, this allows me to see if a treatment trend has helped several people before making a decision about whether it’s something I want to pursue for my healing.

5. Prepare for your doctor’s appointments

In the beginning, I often left my appointments without asking all the questions I’d hoped to ask. To gather my thoughts ahead of time, I began jotting down my concerns in a notebook as soon as they popped into my head. The night before my appointments, I organized those questions and brought my notebook with me to the visit. When my appointment was ending, I’d request to look at my notes and make sure I had sufficient clarification about any remaining matters. As a result, I began leaving my appointments with a solid plan, and I rarely had to spend money on back-and-forth email exchanges that increased my bill. Now, I can schedule my follow-up visits further apart (like every three months instead of two), which helps to lower my treatment costs.

This is by no means a comprehensive list, so let’s keep this discussion going. If you’ve discovered some tricks that have helped you to reduce the hefty price tag of treating Lyme, please leave them in the comments, so that others can be helped by them as well.

7 Unique Supplements to Support Lyme Disease That You May Not Know About

(Please note: This article first appeared on prohealth.com on January 30th, 2017)

Teasel I by Alexander Day

Teasel I by Alexander Day

 

Throughout the course of your Lyme treatment, you’ve probably heard about or tried more supplements than you can count. While it’s easy to feel like you’re potentially missing out on something that helps you heal faster, chances are, you’ve spent a lot of money on things that haven’t worked for you. Using my personal experiences, along with the input from the members of my local Lyme support group, I’ve compiled a list of seven unique supplements that we have found to be helpful in our healing journeys. Some of these supplements might be unfamiliar to you, so (as always) please consult with your doctor before adding any of these into your protocol.

1) Boswellia Extract- This extract is derived from the Boswellia serrata tree (also known as Frankincense), which grows in the dry, mountain areas of India, Northern Africa, and the Middle East. Boswellia is a powerful pain reliever that mediates several pro-inflammatory chemicals in the body, and has been used in Ayurvedic medicine for centuries. In addition to its ability to reduce pain, Chronic Fatigue Syndrome expert, Jacob Teitelbaum, M.D., suggests this herb may also reduce headaches due to its capacity to open constricting blood vessels. Unlike other pain relievers often give to Lyme patients, Boswellia doesn’t appear to cause stomach ulcers or gastrointestinal upset. Typically, you can purchase it in tablet, capsule or powder form. To ensure maximum potency, look for products that contain at least 65% Boswellic acids.

2) Pau d’Arco- This is an antifungal herb and may be beneficial to those dealing with yeast-related issues as a result of ongoing antibiotic treatment. Pau d’Arco is available as a tea or a capsule. However, the tea is thought to be more effective, and, when used in conjunction with other antifungals, it can be useful against Candida. Additionally, Pau d’Arco may possess some antimicrobial properties against Bartonella.

3) Boluoke Lumbrokinase- Boluoke is a purified mix of enzymes from earthworms. (Yes! You read that correctly.) This supplement seems to dissolve fibrin–a substance that shields bacteria in the body, allowing the pathogens to remain undetected by the immune system. It’s also an anti-coagulant, helping to decrease the thickness and stickiness of blood, and it breaks down biofilms. Boluoke is contraindicated in people taking blood thinners and in conditions where there may be an increased risk of bleeding.

4) Teasel Root- In her book, The Lyme Diet, Naturopathic doctor Nicola McFadzean notes that teasel root may be a good starting point for Lyme treatment because it’s gentler than some other herbal protocols and produces minimal Herxheimer reactions. “Teasel root is another herb with anti-bacterial properties with benefits also in managing inflammation and relieving pain,” she states.

5) Black Currant Oil- This oil is a natural source of gamma-linolenic acid (GLA), a strong anti-inflammatory agent. The renowned integrative medicine physician, Andrew Weil, M.D., states that black currant oil stimulates the healthy growth of hair, skin, and nails. In his practice, he uses it for skin conditions, arthritis, autoimmune disorders, and premenstrual syndrome. Weil cautions that the supplement may need to be taken six to eight weeks before any changes are seen. Furthermore, black currant oil may help to support the adrenal glands in Lyme patients who are suffering from adrenal fatigue. Potentially, the oil works by stimulating the production of the adrenal cortex hormones. However, more research is needed in this area to confirm the benefits of black currant oil for the adrenal glands.

6) Lithium Orotate- Lyme literate medical doctor Marty Ross, M.D., says, “Lithium Orotate 5mg is one of my favorite supplements. I recommend it regularly with good benefits to my patients.” It should be noted that lithium orotate is a nutritional supplement and isn’t the same prescription form that’s used in the treatment of bipolar disorder (That’s lithium carbonate). In low doses, lithium orotate offers the brain neuroprotection from toxins; improves thinking and mood, decreases anxiety, and lessens irritability. Please consult with your doctor for proper dosing instructions.

7) Alpha-Lipoic Acid (ALA)- ALA is produced naturally by the body, but its production can decrease with age and illness. It’s an effective antioxidant that helps the cells of the body to metabolize energy. Plus, it potentiates other crucial antioxidants like vitamins C, E, and glutathione. ALA may contribute to improving fatigue and symptoms of numbness and tingling in those with Lyme disease. It’s also shown to be helpful for people with diabetic neuropathy and to maintain brain function in the aging population. Make sure to speak to your doctor before taking this supplement. In some people, it’s been known to lower blood sugar.

Although this isn’t a complete list, these are a few of the favorite supplements many Lyme patients have found to be useful tools in their healing protocols. Of course, every doctor has specific recommendations that they want each of their patients to follow, so be sure to consult with your practitioner for more individualized recommendations.

What are the supplements you’ve found essential to your recovery? I’d love to hear from you, so please feel free to leave a comment.

References:

Alpha-Lipoic Acid. (n.d.). Whole Health Chicago. Retrieved from http://wholehealthchicago.com/2009/05/11/alpha-lipoic-acid/

Black Currant Oil. (2016, August). Weil. Retrieved from http://www.drweil.com/vitamins-supplements-herbs/herbs/black-currant-oil/

Lithium Orotate 5MG, (2015, April 3). The Treat Lyme Book. Retrieved from http://www.treatlyme.net/treat-lyme-book/lithium-orotate-5mg/

Balch, J.F., & Stengler, M. (2004). Prescription for Natural Cures. Hoboken, NJ: John Wiley & Sons.

Buhner, S. (2012) Herbal Antibiotics. North Adams, MA: Storey Publishing.

McFadzean, N. ( 2010). The Lyme Diet. South Lake Tahoe, CA: BioMed Publishing Group.

Teitelbaum, J. (2007). From Fatigued to Fantastic. New York, NY: The Penguin Group.

Shout out to WHAT’s GOO:D by the Vitamin Shoppe

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A few weeks ago, I had the opportunity to tell the story of my struggles with Lyme disease, chronic fatigue syndrome, and interstitial cystitis for the Vitamin Shoppe. To read the article, What It’s Really Like to Suffer from Lyme Disease–And How I’ve Learned to Cope, please click here.

Dr. Elena Frid Talks about Treatments, Autoimmune Encephalitis, and Healing from Lyme Disease

Please note: This article first appeared on ProHealth on June 20, 2017. 

In March, I had the privilege of interviewing  Dr. Elena Frid, a dynamic pediatric and adult autoimmune and Lyme disease specialist in New York City. You may recognize Dr. Frid from her bold, high fashion social media posts; she’s on an attention-grabbing mission to bring encouragement to the Lyme community and educate healthcare practitioners about this illness.

Frid began her neurology practice on the Upper East Side of Manhattan. Within a couple of months, she began to see medically complex patients with no clear-cut diagnoses despite seeing multiple specialists at the country’s top healthcare institutions. “Well, what’s going on with [these patients]?” she asked herself.

Frid’s entry into treating Lyme disease is mainly due to the prompting of her patients. They began bringing her articles about the manifestations of Lyme disease and various autoimmune disorders, and she took notice. Then, one patient encouraged her to attend an ILADS (International Lyme And Associated Diseases Society) conference for further education and training–which she did four years ago–and began treating Lyme patients shortly after that.

A protégé of the renowned Lyme expert, Dr. Charles Ray Jones, Frid has become an outspoken advocate for Lyme patients, and she hopes to create a unified voice and bring guidance to practitioners in the community. Here, she shares her insights on treatments, the cutting-edge concept of autoimmune encephalitis, and reviving the idea that we can heal from this illness.

Jenny Buttaccio (JB): Can you describe the types of patients you see in your practice?

Dr. Elena Frid (EF): Typically, the type of patients we see are young, healthy patients who all of a sudden start getting sick and can’t get better. They start accumulating diagnoses, and these diagnoses should get better with one or two treatment options or medications. But nothing seems to help them. We also see patients who have had Lyme disease for many years and been treated by other physicians in the Lyme community–they’re not getting better or have plateaued. Additionally, we see patients who have been examined by multiple physicians, and they still don’t have a diagnosis.

Symptom wise, we see a lot of cognitive issues and physical symptoms, such as difficulty walking and dizziness, which impedes day-to-day function. We also see a lot of intractable–meaning nothing is helping them–neuropsychiatric symptoms like depression or psychosis. In children, we see OCD (obsessive compulsive disorder), tics, or regressed behavior that is not getting better with mainstream treatments.

JB: As a neurologist, what perspective can you shed on Lyme disease that might be different from other doctors? 

EF: Lyme is a multisystemic illness, and, in my experience, it primarily affects people neurologically. That’s where a neurologist comes into play with this disorder. A lot of what’s happening with the patient is an autoimmune phenomenon. They have inflammation of their peripheral nerves; they have inflammation of the brain that’s known as “autoimmune encephalitis.”

This subspecialty in neurology is very cutting-edge. It was first described in Japan about ten to 15 years ago when I was in training. Initially, we thought this autoimmune phenomenon occurred mainly in patients that had tumors or certain types of cancers. But, over the years, we realized that only about 40 percent of these patients have some malignancy or tumor. And the rest, 60 percent, we don’t know what’s wrong or why this is happening to them.

What I’ve been noticing in my practice is that these patients have an infection-induced phenomenon. A lot of neurologists and autoimmune neurologists–even the CDC– talk about this infectious process. Why this is a problem is because if you don’t treat the infections in the patient–which is ultimately the driving force in this condition–you will be chasing your tail. Therefore, treating these patients, both for their infectious etiology and the autoimmune phenomenon, has to occur simultaneously–Lyme patients are seriously complicated patients!

JB: Thank you for your interesting explanation on autoimmune encephalitis. When working with complex patients, what advice do you give to them to stay the course of treatment?

EF: What’s the advice that I give to patients? Stay motivated. A lot of what I do for my patients is really therapy to stay with a treatment plan. Patients must realize that one needs to identify every infection that’s going on with them and every disease process that’s happening. If there’s an autoimmune phenomenon, it needs to be recognized, and it has to be treated all at the same time. I’m not a proponent of treating each co-infection one at a time. In my opinion, they have to be identified and treated all at the same time. For children, as long as I have a good rapport with the parents, and I explain my end result to them, I think it’s a little easier for them to remain motivated. With adults, some of them need help to understand that they may feel worse before they get better.

Obviously, the earlier you treat [Lyme disease], the better the chances are of recovery. I tell my patients they will need to be treated for one to three years. However, there are anomalies where it will only take a couple of months for people to feel well or longer than three years. Certainly, not everyone falls into that time frame.

JB: In what ways are you educating the medical community about Lyme disease?

EF: Part of what I’ve done this year is go back to my alma mater (Robert Wood Johnson Medical School) and tell [students], “You don’t all need to go into treating Lyme disease, but there’s a huge problem, and you’re all being taught wrong.”

At least, tell them there is a controversy and let students dive into that on their own and make up their own minds!

JB: Are there any other remarks or comments you’d like to say about Lyme patients?

EF: If a patient has a diagnosis of chronic fatigue syndrome, fibromyalgia, neurologic issues, or potentially even some learning disabilities, these may actually be symptoms of Lyme disease because it is a multisystemic illness. Keep digging and explore other possibilities. If you feel something is wrong, something is wrong.

Also, it’s very difficult to see the light at the end of the tunnel, especially if you have had this illness for a long time. What I see on social media or in my office is that people are losing hope. Know the healing process does take time, but there is hope for those battling chronic Lyme disease.

If you’re searching for a healthcare provider, please contact ILADS to obtain a list of medical professionals in your area.  

Lyme Literate Nurse Practitioner, Ruth Kriz, Discusses Recovery, Relapses, and Patient Resources

Please note: This article first appeared on May 18th, 2017 on ProHealth.com.

Last month, I presented part one of a two-part interview with Lyme literate nurse practitioner, Ruth Kriz. If you missed that article, please click here to read it. In this month’s interview, Kriz furthers her discussion on Lyme 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.

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 co-infections, 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 a patient may not be getting better or why they might relapse?

RK: I have a couple of theories about it. I think it’s difficult to know when the Lyme is adequately treated. One reason I like the ISpot Lyme test is that I can tell if we have a solid negative, equivocal, or positive (response), and how positive (the response) is. So I have some metrics to tell me when we’ve reached the negative point; and that 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 co-infections 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.

 

Lyme Literate Nurse Practitioner, Ruth Kriz, Talks About Diagnosing Lyme Disease, Testing, and Communication Strategies for Patients and Clinicians

Please note: This article first appeared on April 25th 2017 on prohealth.com.

Recently, I had the honor to interview 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, testing, biofilms, and more. In part one of this two-part series, Ruth reveals how she began treating Lyme, 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 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 tick-borne diseases 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:

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.

Currently, there’s a test that looks at inflammatory cytokines, called ISpot Lyme. When Lyme is active, cytokines are high, and therefore, reactive. The technology has actually been out there for decades, and using it to check for Lyme is simply a new application. That’s the one I traditionally use. Also, 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 purchase cheap soma overnight 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 Lyme patients could better communicate their 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.

A Lyme patient must become informed, be educated and be their own advocate. They need to find a practitioner they feel is hearing them.

To find a Lyme literal medical professional in your area, fill out the Doctor Searchpage 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.