Update On Our Health Tracker

I readily admit that I wasn’t a dedicated health tracker before this project, because I never found a health tracker that made me want to track.  Unfortunately, I’m not in the minority.  With over 100 million chronic pain patients, and most popular pain trackers topping out at around 100k users, something’s missing from tracking apps.  And until fitbit starts tracking pain, fatigue, and brain fog, wearables aren’t the answer.

Doctors and researchers are clamoring for a better picture of how patients feel between visits, so health tracking could be immensely powerful if it somehow snuck into our daily routine.  I believed, and still do, that if a tracker were easy enough for a lazy m-f like me to use it every day, millions of other patients might just jump on board.

So we dared to dream of a chronic illness tracker that would take 30 seconds or less every day, from beginning to end.  The first few months, our tracker was anything but that  We fumbled between 5-point vs 11-point scales, a painfully slow tracker, and experiments with manually added labs and metrics.  Many users clamored for native apps, but we weren’t ready.  About a dozen iterations later, we found that sweet spot between ease of use and meaningful data, users started tracking every day.  Here’s a rundown of what our tracker looks like now:

 

5 vs 11-point Symptom Scale?  How About Both

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When we switched from an 11-point scale to a 5-point scale, our number of daily users jumped by 200%.  On the flipside, our long-time trackers were frustrated by the loss of granularity from their symptom graphs.  Their graphs still showed the big symptom spikes, but the subtle symptom flares were now missing.  So we now offer the 5-point scale on the left as the default, and offer the 11-point scale as an option for more experienced trackers.

 

Backdating Symptoms Up To 7 Days

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We found that patients can reliably recall their symptom severity up to a week, so we now allow you to enter symptom ratings for the previous 7 days.  (You can still backdate Treatments and Events as far back as you want.)

 

Treatments: Did You Take Them or Not?

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The functions on our treatment tracker have been pretty much the same since the beginning, with “taken today?” tracking, dosage editing, and treatment reviews.  But because of all these options, it wasn’t clear what the daily call to action was.  Well, it’s the simplest one, a checkbox for if you took it today, so we hid all all the other options by default to make this clear.  A lot more users started tracking treatments every day.

 

Events: What Else Happened?

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Sometimes symptoms and treatments just doesn’t cover it.  What if you encountered a stressor today?  Or you introduced a new food and want to see how you’re reacting to it?   This is the way to do it.

The Graph Is Where You Discover Stuff

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Have you ever wondered how to see how your symptom trackers line up with your fitbit or heartrate monitors?  Well now you can.  On your health graph, you can see if your pain gets worse when your steps increase, if your brain fog is worse when you get less sleep, if a stressful argument led to worse sleep patterns.  It’s your sandbox, and we’re excited to help you and your doctors get insights into your illness.

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Our web app is available now at www.healclick.com/tracker.

 

Rheumatoid Arthritis Clinical Trial

RHEUMATOID ARTHRITIS CLINICAL TRIAL SEEKING PARTICIPANTS

There is a clinical study available to those with Rheumatoid Arthritis, where the purpose of the study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in treating rheumatoid arthritis.

More about the study:

  • The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
  • At least 174 people have already taken this drug in clinical trials

If you are interested, the full study details and eligibility criteria are listed here.

Eligibility Criteria:

Participants must:

  • be at least 18 years old
  • have been diagnosed with rheumatoid arthritis for at least 6 months
  • have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
  • have received methotrexate for at least 4 months with 25 mg/week as the maximal dose

Participants must not:

  • have significant liver disease, or congestive heart failure
  • be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)

Please complete the online questionnaire to check if you’re eligible for the trial.

 

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If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.

Learn why I’m talking about Clinical Trials

Health Tracking: 3 reasons you should be

Health tracking is the next big thing. From logging the severity of your symptoms, to high-tech gadgets that measure your every move, health tracking has become part of daily life for many patients. Whether you’re a diligent tracker, have trouble being consistent, or don’t even know what I’m talking about, here are 5 reasons that you should jump on the health tracking train!

1. Track To Remember

Think back to the last big flare that you had. Yeah, that one. Was it a Tuesday or a Wednesday? What did you have for lunch the day before? Were there warning signs? Did you overdo it? Was it around the same time that you skipped that dose of your medication? Are you sure you didn’t change something the week before?
There is NO reason that you should be trying to remember all this but you probably do. I mean, somebody’s got to manage your illness, so it may as well be you! Instead of constantly taxing your working memory, I propose a better method. Track with HealClick and let us be your memory. Use our health graph to see whats happening over time or order an analytics report and let us do the heavy lifting for you.


 

2. Keep All Your Data In One Place

Who has a binder full of test results over here, a mental checklist of the treatments you’ve tried, and a constant wondering about whether you’re better or worse than you were last month? Centralized health tracking can take care of all of this. Tracking with HealClick means you’ll have one place where all your health data is stored. No more digging for that lab test result or rifling through a calendar to try to remember that last crash, your data is just a click away.


 

3. Show Your Doctor What’s Up (or Down)

The average office visit lasts a whopping 15 minutes and if you’re lucky, about 5 minutes of that is spent going over your history and what happened since your last visit. Now I don’t know about you, but when the Doctor gets to “so, how have you been since the last time?” my brain likes to focus on either blank nothingness or trivial details. But now, I come armed with handouts. Instead of trying to cram a month’s worth of symptoms into 3 sentences I can point to my report and say “This, this and this are better after starting this treatment but I’m still having trouble with this”.


 

Why you should use HealClick’s tracker

Why not one of the other health trackers on the market? Because you can track your health and learn from other patients. Tracking your health gives you all of the benefits I’ve already mentioned but when you track on HealClick you’re generating treatment reviews and helping other patients learn from your experience. Search our database for reviews from other patients to see whats working and whats not. We’re already working with our research partners to use all this (anonymous!) data to fuel clinical trials and find effective treatments. Tracking on HealClick benefits you and it benefits all of us.

Addressing Biotoxins in Persistent Lyme Disease

This is part 2 of a series on persistent lyme disease. 
Read Part 1: Treating Chronic Lyme Disease When Doxycycline Fails

When Antibiotics Aren’t Enough for Persistent Lyme

There is another very important way of explaining Post-Treatment Lyme Disease Syndrome (PTLDS) that has to do with what happens if you are one of those people who is genetically predisposed to retain certain toxins made by living things. In the genetically susceptible, biotoxins can trigger a type of inflammation that results from an innate immune system that is locked into overdrive. This chronic inflammatory response syndrome (CIRS) always produces a multi-system, multi-symptom illness.

Biotoxins from the environment

Our understanding of the pathophysiology, diagnosis, and treatment of CIRS rests primarily, but not solely, on practice-based proof of concept and outcomes research conducted by Shoemaker and colleagues over the past 17 years (Shoemaker, 2014). The vast majority of CIRS cases get triggered when toxins produced by certain molds and inflammagens from other sources known to appear in the air of water-damaged buildings are breathed into the body and retained for genetic reasons, setting off the runaway train of innate immune system inflammation.

Biotoxins from lyme

There is also suspicion that some types of bacteria inside the body are able to produce biotoxins. Donta and colleagues identified what they described as a toxin produced by Bb back in (Donta, ?). Since the Bb  chromosomal genome of 900 genes has been sequenced and none of them code for a toxin, the gene coding for Donta’s toxin would have to be located within plasmid DNA. His work has yet to be replicated.

Treatment

Shoemaker has shown that the adsorbing agents, cholestyramine (Questran) and colesevalam (Welchol) can bind these toxins in the gut space and remove them from the body, provided that there is no ongoing exposure to airborne biotoxins because the ingress of new toxins can cancel out the egress achieved by the binders.


 

Keith Berndtson MD is the medical director of Park Ridge Multimed and a leading midwestern resource for patients who have, or may have, Lyme disease.  Read his entire bio here.

Two Steps Forward: Jess + Medical Marijuana

 

Two Steps Forward is a series where users share their treatment success stories. Jess shares her improvements with Medical Marijuana for Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 


 

Tell us about yourself! What’s your story? 

I ‘officially,’ got sick in 2003. I was in my first semester of college, loving every minute of it, and generally having a pretty “normal” college experience. In October, something changed. Suddenly, I was sleeping 18 hours a day and still felt exhausted. It was that bone-crushing fatigue that feels as if your normal, healthy bones have been replaced by lead.

Several months later, the pain began in earnest. At first, it was intermittent, but by the spring of 2004, I was in pain almost all of the time, day and night. A slew of medications followed that did not seem to adequately manage this pain or any of my other symptoms, either.

Eventually, I was diagnosed with ME/CFS, Fibromyalgia, IBS, and Myofascial Pain Syndrome. Over the years, I’ve continued to see my official list of diagnoses grow longer and longer.

 
So, what’s been helping? 

I’ve made lots of little changes that have all added up to mean a whole lot. Since many of the things that have helped have been small changes, keeping track of it all has been extremely important for me. Tracking symptoms has been a very effective treatment in and of itself. If it hadn’t been for tracking, I wouldn’t have known how little Lyrica actually did to manage my pain. Or how much removing processed foods from my diet had helped. Exploring alternative treatments eventually led me to Medical Marijuana.

I take a no-THC/high CBD tincture made from industrial-grade hemp every morning while my coffee is brewing. I take another small dose via vaporizer when I get home from work for the day, and a much larger “flood” dose via edible right before bed to make sure I can fall asleep. Chocolate tootsie rolls taste SO much better than Ambien- and no sleep walking/driving, either!

I do swap out one strain of medical marijuana for another periodically to help manage different symptoms. If I’m waking up feeling less rested, I use a different strain at night that’s known to be more potent and sedating. If I’m getting nausea in the evenings, I switch to a strain slightly higher in THC around dinnertime.

 

What symptoms are improved? 

I am now entering my third year on Medical Marijuana. I still meet all the diagnostic criteria for all my illnesses, but the severity of all of my symptoms has decreased tremendously.

“The fatigue has lifted, and my brain is back, baby!”

I am sleeping through the night, and I am able to wake up at the same time every morning. I actually feel rested. The list of foods I must avoid to keep my IBS in check has grown smaller.

The fatigue has lifted, and my brain is back, baby! The pain is so much better. I don’t think my pain levels have ever been this low, this consistently.

The best part is that I’m not worrying about whether this will one day give me a seizure disorder, heart attack, stroke, suicidal thoughts, or some other ungodly problem like so many of the prescription drugs I’ve been on. Cannabis does not affect the brain stem the way narcotics do, which is why there isn’t a single recorded death from cannabis on record anywhere in the world in the entirety of recorded human history. I’m really excited about this therapy being available to more patients, because I think it’s honestly much safer and more effective than many of the prescription drugs currently available.

 

How did you know you were doing better? 

Being able to get back to teaching was my big “WOW,” moment, even though I’m still setting my own hours specifically to work around symptoms from time to time. When my cognition started returning, I knew I was on the right track. My mind did not seem to fully return until I started Medical Marijuana. Now that we know of THC’s neuro-protective qualities from double-blind clinical studies, I believe that this is what really helped my brain heal.

 

What does this improvement mean for you? 

I feel as if I’ve gotten my life back. I don’t think I’ll ever be “cured” from medical marijuana, but my quality of life has sure improved a lot!

 


Read more Medical Marijuana reviews from other patients. Tried Medical Marijuana? Track your own symptoms and treatments at HealClick.


 Jess (@Vbjess) is a patient with Fibromyalgia and ME/CFS and describes herself as: “Been sick and fighting for about 11 years now. Many of my symptoms started around puberty (age 12/13), but I did not become disabled until the onset of ME/CFS in 2003. After that, my medical records got pretty thick, pretty fast. I’ve finally gotten a handle on my illnesses in early 2013 after starting medical cannabis. It has given me my life back. I can now use my teaching degree to run a small business providing private tutoring services in my clients’ homes. I am so very thankful to be able to work, and especially able to work on my terms in a way that is unlikely to seriously exacerbate my symptoms! I run a local Fibromyalgia support group in Tucson (www.azfibro.com), and sew (or attempt to), crochet, and listen to books on tape in my spare time.”

Restorative Yoga: Put Your Feet Up!

Try this restorative yoga pose that slows down the nervous system and promotes release and relaxation to the entire body.

 

The pose and its benefits:

Legs Up the Wall Pose, Viparita Karani (Vip-par-ee-tah-car-ahn-ee), is one of my favorite poses to do to relieve tired or cramped legs and feet and calm the mind. The restorative nature of this pose allows blood to flow to parts of the body that have been abandoned as we stand or sit vertically during the day. It is refreshing to the brain and removes stagnant blood from the lower extremities. Restorative Yoga is a style that is especially focused on passively relaxing ones muscles and letting go of stress and tension. Restorative Yoga rests the body and engages the mind allowing all of your concentration to focus on the breath and positive healing thoughts; you shouldn’t feel that you are straining or working hard in these poses.

Getting into the pose:

You will use a small support under your hips for this pose. You may use a yoga bolster if you have one, but a pillow or a rolled up blanket or towel will do just the same. You may begin by lying on your side with your knees bent and then gently roll onto your back while extending your legs up the wall. You want your hips to be a few inches away from the wall, once you are at a comfortable distance from the wall your legs should feel weightless and able to support themselves. Open your shoulder blades away from the spine, and allow your arms to rest extended out from your sides, palms facing up.

While in the pose close your eyes and relax all of your muscles, open the chest and heart, and feel the legs release. Nourish the body with this sense of giving in and letting go. Breathe calmly and naturally feeling the gentle rise and fall of the breath in the abdomen. Stay here for 5-10 minutes or longer if you’d like. If your feet begin to tingle while in the pose you may bend the knees out to the sides, touch the soles of the feet together and slide the outer edges of the feet along the wall bringing your heels close to your pelvis.

Releasing out of the pose:

To come out of the pose, be sure not to twist off the support when coming out. Instead, bend your knees and push your feet against the wall to lift your pelvis off the support. Then slide the support to one side, lower your pelvis to the floor, and gently roll over to one side. Rest on your side for a moment, then gently use your arms to bring yourself back up to a seated position.

 


Cautions and Contraindications:

Many teachers maintain that this pose is an inversion, and as such feel that it should be avoided during menstruation or pregnancy. As with any inversion, Viparita Karani should be avoided if you have serious eye problems, such as glaucoma. Listen to your body; if you know that having your head below your heart is not good for you, please do not do this. Additionally, if anything ever feels uncomfortable, just not right, or hurts, practice self compassion and know when not to push yourself. Please practice this pose and all poses at your own discretion.

Wdoregon is a Certified Yoga Instructor (RYT 200) and has been practicing and teaching for over 10 years.

Top 5 Fibromyalgia Treatments

Fibromyalgia patients have been reviewing their treatments on HealClick and we have been compiling them. With our database of reviews growing larger every day we’re starting to see trends as far as what treatments are reported as most effective. We’ve crunched the numbers and today we present the top 5 most effective Fibromyalgia treatments as rated by the HealClick community.


 

1. Medical Marijuana (Cannabis)

We’ve talked about Medical Marijuana for Fibromyalgia before and how it beat out 3 leading Fibromyalgia drugs. Our users have rated it the highest among all the Fibromyalgia treatments with an average rating of almost 5 out of 5 stars! With the reported anti-inflammatory effects, pain-blocking effects, and the low rates of side effects reported, it’s no wonder that our Fibromyalgia users love the MMJ. But remember that medical marijuana is not legal in all 50 states or in many countries. And, keep in mind that different strains of medical marijuana have different effects.


 

2. Gluten Free (Wheat Free) Diet

Ditch the bread, ditch the pain? Many of our users think so. It’s one of the most reviewed treatments on the site, likely due to the fact that everyone and their mother has tried a gluten free diet in the past few years. When it works for Fibromyalgia patients it seems to work remarkably well at decreasing overall pain levels and the number of flares. This is probably why the average rating is over 4 out of 5 stars. Scared that giving up the gluten means giving up on convenience and taste? Delicious holiday recipes or easy everyday recipes are abundant and gluten free products are in every grocery store.


 

3. Topiramate (Topamax)

This medication is designed to prevent seizures and migraines and is successful at managing pain for many of our users. With an average rating of 4 out of 5 stars it must be helping. Just watch out for side effects. Many users report cognitive issues to the point where one reviewer nicknamed the drug Dopamax.


4. Yoga

Gentle stretching and strengthening exercises are often recommended as Fibromyalgia treatments.  With an average rating over 4 out of 5 stars, Yoga seems to fit the bill for many HealClick users. Yoga is a great way to move your body at your own pace, don’t push yourself past your limits. You can even do Yoga before you get out of bed in the morning. Plus if Yoga is part of your treatment protocol you now have the perfect excuse to wear yoga pants 24/7.


 

5. Pregabalin (Lyrica)

It likely comes as no surprise that this drug rounds out this list of top rated Fibromyalgia treatments. It’s the first drug that most patients are prescribed after being diagnosed. Lyrica works to calm nerve pain and so it a powerful tool against Fibromyalgia. What’s interesting is that the average rating for this treatment is just under 4 out of 5 stars even though there are many stories about the intense side effects that users experienced while on this medication. Weight gain was reported as the most common side effect.


 

Now it’s your turn. Please come over and leave a review sharing YOUR experiences. This list is constantly evolving as more Fibromyalgia treatments are reviewed. In order to really understand what Fibromyalgia treatments are effective we need patients like you to track and review your treatments. Because HealClick’s database is used for medical research, together we can unlock medical mysteries and find effective treatments for the millions of Fibromyalgia patients searching for pain relief.

Interested in learning about other Fibromyalgia Treatments? Check out HealClick’s Fibromyalgia Treatment reviews for more information on the 5 treatments listed above plus thousands more.

Treating Chronic Lyme Disease When Doxycycline Fails

This is part 1 of series on persistent lyme disease.
Read Part 2: Addressing Biotoxins in Persistent Lyme Disease

Why Doxycycline Works….Initially

If you knew a tick had bitten you, and you developed the bull’s-eye rash and a flu-like malaise later that week, and you were aware that this meant Lyme disease, you’d see a doctor to start an antibiotic. The doctor who greets you should know enough to prescribe Doxycycline. The most common approach to treating acute Lyme disease relies on Doxy alone. Those who follow the guidelines of the Infectious Disease Society of America (IDSA) recommend two weeks on Doxy. The International Lyme and Associated Diseases Society (ILADS) recommends using Doxy for 6 weeks.

Doxy has the ability to disable Lyme spirochetes. The most common Lyme spirochete is known as Borrelia burgdorferi, or Bb. Your immune system has an easier time dispensing with disabled spirochetes compared to the more difficult task of hunting down fully functional, immune evasive spirochetes. Doxy amplifies your immune response against Lyme spirochetes. As a result, you are likely to feel worse for several days after starting the Doxy. You’ll start to feel better within a week or two as your immune system quiets down.

Doxycycline Doesn’t Kill All Forms of Borrelia

Does that mean you were cured of acute Lyme disease? Hmm.  Research clearly shows that Bb is pleomorphic. This means that Bb has more than one morph, or physical form. Bb is known for its squiggly spirochete form but it can shift into what’s called a round body form. A Lyme round body consists of 6 to 12 spirochetes rolled up together, surrounded by a phospholipid membranes. Many use the term “cystic form” but this is less accurate because the outer membrane of a cyst is not composed of phospholipids.

The 6 to 12 Bb spirochetes inside a round body are not metabolically active. Without metabolic activity such as protein synthesis or self-replication, there is nothing for an antibiotic to disrupt. Despite being in a state of suspended animation, round body Bb spirochetes remain viable by mooching nutrition from their surroundings. We suspect that they are engaging in the passive transfer of genes, as if they were Pokemon cards, each conferring a unique form of defense against you, their host.

In this round body state Bb tolerates the vast majority of antibiotics. So what if your Doxy led attack against Bb induced groups of spirochetes to morph into their round body form? You’d feel better because the round body forms are too inactive to cause inflammation. Their phospholipids membrane renders them virtually invisible to your immune system. No inflammation, no symptoms. In other words, we cannot be sure that we have beaten your Lyme infection into submission by using Doxy alone.

Post-Treatment Lyme Disease Syndrome

A few months may pass, but the Bb that survived the Doxy attack by hiding within round bodies may reactivate. Some of the reactivated Bb may draw the attention of your immune system so there could be bouts of inflammation and symptoms to go with them. Your joints could start to feel painful and stiff. Your heart could race and skip beats now and then. You might find that you have trouble staying focused on your work along with short-term recall or word finding problems. You might grow increasingly irritable and all of a sudden notice that you’re unusually sensitive to bright lights and harsh sounds. Then you might notice that you’re sleeping poorly, tired most of the time, that your neck hurts, and that there’s something wrong with your vision.

You could very well have post-treatment Lyme disease syndrome, or PTLDS, not because your course of Doxy was too short but because treatment took aim only at Bbs spirochete form with no attention paid to the round body form. This strategic error would allow enough Bb spirochetes to duck and cover as round bodies and ride out the Doxy storm only to reactivate months later in numbers high enough to cause irritation and inflammation in multiple tissue sites. In my opinion, the treatment of acute and persistent Lyme should include an antibiotic that can kill or disable the spirochete form plus an antibiotic that can kill or disable the metabolically inactive round bodies. We can end its game of hide and seek.

Combination of Antibiotics to Beat Lyme Into Submission

Any antibiotic strategy against Lyme disease that relies on a single antibiotic makes no sense. What makes sense is to use one antibiotic that is able to kill or disable metabolically active Bb. This antibiotic could be from the penicillin, cephalosporin, tetracycline, or erythromycin class and would be used to “patrol the streets.”

The second antibiotic should be used to “beat the bushes” for round bodies. Any round body Bb able to escape such and antibiotic would theoretically get caught in the dragnet set up by the antibiotic being used to patrol the streets.

Three antibiotics have been shown to work against the metabolically inactive round body form of Bb.  They are:

1.  Metronidazole (Flagyl)

2.  Tinidazole (Tindamax, or Tindy for short)

3.  Cefuroxime (Ceftin)

Based on a study from the University of New Haven (Sapi, 2011), Tindy does the best job of killing viable Bb in the lone spirochete and round body form. Ceftin was recently shown to have strong activity against both forms in a study from Johns Hopkins (Feng, 2014).

We know how Flagyl and Tindy work. They track to bacterial DNA and disable it via nitrosative stress. It’s not clear how cefuroxime disrupts metabolically inactive spirochetes in a dish, let alone in a living system, but based on the Hopkins study it may, like Tindy, be a dual-purpose antibiotic that is able to cover both lone spirochetes and round body forms. This would depend on how well Ceftin can penetrate living cells and tissues in search of round bodies.

In my experience, people have a harder time tolerating Flagyl than any other antibiotic used to treat Lyme disease. Maybe that’s why they called it Flagyl–because it flagellates people. I like to spare my patients the misery that Flagyl can cause. On the other hand, my experience with Tindy is promising.

In my practice roughly 70% of patients with suspected PTLDS experience a Jarisch-Herxheimer reaction the day after they have taken Tindy. The remaining 30% Herx the day they take it, two days later, three days later, or don’t Herx at all. The latter event reduces my suspicion of PTLDS as a viable diagnosis. This is because Herxing on Tindy indicates that it is showing the immune system where the round body action is. This is supported by the observation that cessation of Herxing on the higher dose of Tindy correlates with a substantial reduction in symptoms.

Because Tindy is heavy duty and can cause neuropathy I pulse it twice a week. I also let the patient pick which days. It doesn’t hurt to vary the schedule. Once the patient determines his or her pattern of Herxing on the Tindy, they can adjust the schedule to avoid Herxing on a day when the patient can’t risk being impaired. Herx moderation strategies help in most cases. By using Tindy to beat the bushes for round body forms twice a week, and monitoring the onset, duration, and strength of the Herxing it causes, we get an idea as to whether our antibiotic combination is beating Bb into submission.

A Realistic Goal for Treatment

We know from studies on healthy mice that Bb can reactivate in response to a feeding tick (Hodzic, 2014) and to immune suppression (Yrjanainen, 2008). Exactly what degree and form of immune suppression is required to reactivate round body or persister forms of Bb remains to be seen. It may be that the most realistic goal of treatment for Lyme disease is to kill or disable as many Bb as possible so that any spirochetes left in the body are metabolically inactive and therefore not causing inflammation. The goal of eradication is less realistic given the immune evasive and persistence abilities of Bb. Besides, we have no methodology for proving eradication of Bb.

Granted, it is a challenge to reassure patients that beating Lyme into submission is a “win.” The thought of viable spirochetes in suspended animation isn’t exactly comforting. When Herxing ceases on the 500 mg dose of Tindy it is time to talk about stopping the antibiotics. I prepare the patient by pointing out that symptoms may occur in the first three days or so off of antibiotics. These symptoms are produced by pathways having to adjust to the absence of the antibiotics that have been present for several months (typically 3 to 9 months).

I explain that nature likely would not select a mechanism for an immune evasive species like Bb that would have it poke it’s head above the wall the very first day that a months-long antibiotic attack ceases fire. The antibiotic withdrawal phenomenon happens early and ends quickly. Metabolically active Bb may replicate at varied intervals, the slowest being about 6 weeks. So if the patient makes it 6 weeks off antibiotics without symptoms we infer that whatever Bb remain are metabolically inactive and that we’ve beaten Lyme into submission. Should symptoms recur at some later date, they should not be severe and should respond to a much shorter course of a common sense antibiotic combination.


 

Keith Berndtson MD is the medical director of Park Ridge Multimed and a leading midwestern resource for patients who have, or may have, Lyme disease.  Read his entire bio here.

5 Yoga Poses Without Leaving Your Bed

Do you wake up feeling like you were fighting ninjas during the night? Try these 5 simple stretches before leaving the comfort of your own bed. Don’t worry about getting the poses “right”, just listen to your body and move freely where it feels good to you.

1. Shavasana (Corpse Pose)

Begin by lying flat on your back as shown. Move any pillows out of the way so you can create a flat spine. If you’d like, you can continue this stretch by reaching your arms above your head and stretching through your legs extending your body as long as you can from toes to fingertips. This should create a wonderful expansion in the rib cage and spine.

 

Shavasana_9879

 

 

2. Wind-Relieving Pose (Pawanmuktasana)

When you’re ready, draw one knee in towards your chest while keeping the other leg extended. It does not matter how close your knee comes to your chest, just go to where is comfortable and you feel a gentle stretch. Do this on both sides.

 

HalfWindRelieve_9866

 

3. Knees-to-Chest Pose (Apanasana)

From here gently hug both knees into the chest with your arms on the outside of the knees in a loose grip. If the neck feels like it wants to arch, lower your legs a bit to take the pressure off the cervical spine and/or prop your head up with a pillow.

 

WindRelieve_9846

 

 

4. Belly Twist (Jathara Parivartanasana)

From here you will come into a gentle twist. Lie your arms out to the sides and slowly lower both knees to one side. If you comfortably can, you can choose to turn your head to gaze in the opposite direction of the knees to complete the twist into the cervical spine (neck). If this feels like too much, keep your gaze towards the ceiling. If the twist feels too intense, use a pillow under the knees to prop them up and lessen the intensity of the twist. When you’re ready, very gently use your arms to bring the knees back to the chest in the middle and lower the knees over to the other side, repeating this in the other direction.

 

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5. Easy Pose (Sukhasana)

When you have finished your last twist, roll your whole body over to one side in a fetal like position. Rest here for a moment, then use your arms to gently prop yourself up to a comfortable seated position. You may sit however your legs and arms are comfortable, just focus on creating a long and straight spine, reaching the crown of your head to the ceiling. Take a minute to notice and acknowledge the natural rise and fall of your breath, open your eyes, and smile.

 

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Remember to always practice at your own discretion and within your own safe comfort level. All of these poses should feel good, if something doesn’t feel good please don’t do it.

Wdoregon is a Certified Yoga Instructor (RYT 200) and has been practicing and teaching for over 10 years.

Photos copyrighted by YogaBasics.com, used with permission.

Two Steps Forward: Sparrowhawk + Chelation

 

Two Steps Forward is a series where users share their treatment success stories. 


 

I have hope now in a way I haven’t for several years that there are things I can do that affect my symptoms in a positive way.

“I’m seeing some serious rays of recovery sunshine here people.”

I am not “cured.” I still have bad moments, and bad days/nights, but the relief is that I am not living a crisis hour-by-hour, symptom carousel, and I no longer suffer with the constant feeling like something is terribly wrong. I have entire days where I feel relatively normal (within my own limitations). I’m still not “healthy” by any stretch but I’m seeing some serious rays of recovery sunshine here people.

So, what’s been helping? 

I’ve started what will likely be a long journey to get rid of heavy metals; frequent low dose chelation, just 1mg DMPS (every 6 hours) mixed by a compounding pharmacy with celtic sea salt. Why? Synergistic toxicity. The idea is that multiple toxins together are exponentially worse than one toxin alone. So I dealt with mold (remediation and reconstruction) first and now I am dealing with my high mercury and arsenic levels.

It’s funny, I ran into the Frequent Dose / Andrew Hall Cutler stuff in the first six months after I got sick, but it seemed so complicated and long term I just filed it away. I was still thinking I could get cured by some quick fix at the time. I circled back to the topic about a year later after exploring many other paths, and of course by that time I had confirmed not one but three heavy metal problems.

What symptoms are improved? 
  1. Normal Sleep: I’ve started falling asleep ‘normally’ for the first time in 3+ years.
  2. Increased Resilience and Energy: I can get up, make breakfast, take a shower, and sit down to work at my home office without needing to lie down in between. Unheard of levels of energy versus the past several years.
  3.  Heart Issues: My heart/chest pains and dizziness are gone, and my heart rate (POTS) has been really stable and low even while standing.
  4. Mental and Emotional Outlook: I feel more positive more of the time. For instance I’ve caught myself actively planning for the future, which I did not do for the bulk of the time since my collapse as I wasn’t sure I was going to live long enough for it to matter.

I think we each have to navigate what things we can do for our own healing and they may not be the same. In my case I don’t think I could be doing this without having first addressed mold, getting my blood sugar stabilized, food sensitivities identified, etc… That got me from being able to do only one thing a day (shower OR laundry OR empty the dishwasher) to being able to do several things a day with enough rest in between.

“I think we each have to navigate what things we can do for our own healing and they may not be the same.”

What does this improvement mean for you? 

I’ve been sick long enough that new patterns have established themselves in the house and they feel like they are “right” so now when I actually try to insert myself in a new way, it feels “off” or “weird” to my family and to me. We’re going to have to reconfigure the dining room to reflect a healthier Dad. Right now there is literally nowhere for me to sit because I usually eat back in my room. What I hope is that, just like they got used to me being sick, as I gain capacity in small ways over time, incrementally we can keep a balance and adjust accordingly.

Read more Chelation reviews from other patients


 @Sparrowhawk is an ME/CFS patient and describes himself as: “Corporate dweeb. Parent of two. Described by my last therapist as “that Type-A Buddhist guy” Improving since I started mold avoidance, then frequent low dose chelation for mercury.” Track your own symptoms and treatments or share treatment experiences at HealClick