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Prestigious Study Finds Proof Of Chronic Lyme Disease

At long last, researchers have confirmed the presence of Lyme disease, an infection with Borrelia burgdorferi, following the recommended antibiotic treatment. Johns Hopkins University reported that chronic Lyme disease is a “real” disorder.

The study involved 61 patients who completed the recommended antibiotic course and continued to report symptoms of joint pain, fatigue, cognitive deficits, insomnia, and depression despite largely normal physical exams and blood testing. People with this holdover infection commonly call it chronic Lyme. Researchers call this collection (called constellation in medical speak) “post-treatment Lyme disease syndrome” or PTLDS.

Unfortunately, the study did not address what is perhaps one of the most controversial aspects of chronic Lyme–whether it’s caused by lingering infection and is treatable with additional courses of antibiotics.

tired woman on couch
Lyme Disease is growing in numbers and locations.

Published in the December issue of in Frontiers of Medicine, these findings hopefully will spur further investigation into the cause of the persistent symptoms. Lyme disease rates have climbed steadily since the mid-1970s when it was initially recognized in Lyme, Connecticut. As the disease prevalence and incidence (how widespread and the number) have grown in the following decades, so have reports of what people with it call chronic Lyme.

Medical experts have questioned the existence of a persistent B. burgdorferi infection because there is no direct evidence of the bacteria’s ongoing infection in blood or tissue samples. To help distinguish persistent infection, researchers first studied people with PTLDS, defined by the Infectious Diseases Society of America as involving significant fatigue, widespread musculoskeletal pain and/or cognitive difficulties arising within six months after completion of antibiotic therapy for physician-diagnosed Lyme disease and lasting at least six additional months.

Study Parameters Were Rigorous

Researchers gathered prior medical records with evidence of Lyme disease and excluded all those who have conditions that may mimic those of PTLDS–like ME/CFS or fibromyalgia. They ended up recruiting 61 people who were either self- or provider-referred to the Lyme Disease Clinical Research Center at Johns Hopkins and met study criteria.

Individuals studied were almost evenly split between males and females, and ranged in age between 18 and 82. Healthy controls (n=24) were also split evenly between sexes and about the same ages as the study group but had no clinical history of Lyme disease symptoms and no antibodies to B. burgdorferi that would indicate past or current infection.

A comprehensive battery of tests and exams were performed on everyone. Study participants also completed standardized questionnaires to measure the severity of fatigue, pain, sleep disturbance and depression, as well as their quality of life. 

Few clinically significant differences in blood tests or physical exams were found in comparing the control group with the PTLDS patients. The study did find, however, that some people with PTLDS had a diminished vibratory sensation–a marker for neurological involvement seen in other studies of Lyme disease.

scatter graph
Participants with post-treatment Lyme disease syndrome (PTLDS) were compared to controls on the following: (A) Fatigue Severity Scale, (B) the Short-Form McGill Pain Index, (C) Pittsburgh Sleep Quality Index, (D) the Beck Depression Inventory-II, and the SF-36 (E) Physical and (F) Mental norm-based scores. The mean and 1 SD are shown by the solid lines. Clinically relevant cutoffs for each measure are shown by the dotted line.

There were significant differences in the results from the questionnaires meant to measure subjective experience. Approximately 50 percent of the PTLDS patients reported severe fatigue, 28 percent reported severe pain, about 23 percent said they had severe cognitive issues and about 31 percent reported severe sleep difficulty. None of the healthy controls reported any symptoms in the severe range.

The researchers found 19 symptoms that are not in the standard PTLDS criteria for diagnosis that were reported to be more severe among PTLDS patients than in controls. These symptoms included severe sleep difficulty (32%), severe neck pain (8%), severe numbness or tingling in hands or feet (10%), severe irritability (8%), severe low back pain (3%) and severe headache (17%). These symptoms reflect the significantly higher scores for depression and correspondingly lower scores on a questionnaire used to measure health-related quality of life, the SF-36.

No Clear Biomarkers Were Found

“Even though their exams and lab tests didn’t show much in the way of a common or clear biological marker or markers of PTLDS, it’s clear these patients don’t feel well,” says study co-author Kathleen Bechtold, Ph.D., associate professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine. “These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day.”Even with no objective laboratory or exam markers, Bechtold believes the results of this study suggest that PTLDS can be diagnosed through careful and thorough examination of symptoms. Finding a way to accurately identify people with PTLDS will improve diagnosis and care, as well as leading to future therapies. But as we have seen with ME/CFS, without objective laboratory or physical exam markers, mainstream healthcare providers likely are not going to diagnose it. The Johns Hopkins researchers are currently analyzing test results and blood to search for biomarkers that were not examined in the initial study.

The Centers for Disease Control and Prevention (CDC) estimate 300,000 people are diagnosed with Lyme disease each year. Of those diagnosed early and treated following infectious disease recommendations, between five and 30 percent go on to experience PTLDS. Factors such as delayed diagnosis and inappropriate antibiotics and steroids (like Prednisone) given before recommended treatment occurred in over half the PTLDS patients in this study. The Johns Hopkins researchers said this could account for the prevalence of chronic Lyme.

You may also be interested in this article.

https://www.aswellasicanbe.com/chronic-illness/fight-chronic-illness-autoimmune-diseases-diet/

 

 

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29 “Habits” of people with invisible illness by Paige Wyant

Paige is a staff member of The Mighty, a wonderful, caring digital health community created to empower and connect people facing health challenges, chronic illness and disabilities. This article was originally published on www.themighty.com last August and reprinted here with permission. So here’s Paige and the Mighty community. I hope you enjoy reading and identifying with it as much as I did.

Unless you’ve experienced it yourself, it can be nearly impossible to understand what someone with a chronic, invisible illness goes through on a daily basis. Not only can the physical symptoms be painful and exhausting, but they can take a toll on your mental and emotional health as well. Guilt, anger, depression and isolation all too often accompany fighting a daily battle not many others can “see.”

In response to the physical and emotional aspects of living with an invisible illness, many people tend to develop certain “habits” or behaviors that help them manage their condition and its effects. We asked our Mighty community to share the “habits” they’ve developed – good or bad – from living with invisible illness. Maybe some of the following will sound familiar to you, too. Let us know how you cope with illness in the comments below.

Here’s what the community shared with us:

1. “I over-explain when asked about my health, and consequently my weight. I also avoid social situations, out of sheer exhaustion, preferring online socializing instead.”

2. “I always look for a chair when I’m out, as standing up for too long exhausts me. I carry water with me everywhere, as I get dehydrated easily.”

3. “Saying ‘no’ to almost everything. It’s much easier to change to a ‘yes’ later than having to backpedal to a ‘no’ later. This was a hard thing to learn because I want to do all sorts of things, but I recognize I am limited by my illnesses.”

4. “Not exercising – ever. Even though I know it would help me, I’m too busy ‘saving up my spoons‘ to consider throwing them away at the gym or even on a walk around the block.”

5. “I have a terrible habit of not finishing tasks. I get halfway done and I stop to take a break with the intention of going back and I just never do. It really annoys my husband.”

6. “I live with music constantly playing through an earphone. By keeping the music playing it helps me filter other sounds and feelings. It stops over-stimulation. It lets me feel calmer in situations that cause me stress above my pain level.”

7. “Each morning before I get out of bed, I lay there taking stock of my physical aches and pains. Reach for my topical pain relief and rub it in. A few stretches and then I get up (usually limping) and start my day.”

8. “I constantly apologize even if I haven’t done anything. I guess part of me hopes if I apologize enough, it will make up for my not being able to do as much as someone else my age.”

9. “I journal everything from what I ate at what time to when I started getting a headache then when it got unbearable and if I left the house and for how long so I can look back and see if there are patterns that caused flare-ups and keep track of what treatments have caused side effects and which ones have helped.”

10. “I avoid scheduling and going to regular self-maintenance appointments such as the dentist and the eye doctor because I’m so overwhelmed with all of my other health and medical stuff going on.”

11. “I smile a lot. I once got hit in the face with a soccer ball during practice, and I kept smiling with tears running down my face to let everyone know I was OK. I would rather [struggle] in silence than for someone to worry about me so I developed a great smile to distract and deceive them. My eyes give it away though. I can’t always hide the exhaustion in my eyes.”

12. “Stashing medicine (and usually snacks) everywhere I might need it. There’s even a bottle of ibuprofen stuffed between the cushions of my couch.”

13. “Multitasking – my chronic illness drains my energy, so when I have a flare-up or a bad day, I’ve learned to do as many things as I can to make my bad days a little easier.”

14. “I don’t eat dinner. If I eat too late in the day, then I don’t sleep well with the pain. I have battled severe Crohn’s disease most of my life. Every meal is carefully considered and every meal is a potential pain bomb.”

15. “I pop my neck, back, knees, elbows, fingers constantly, because it helps ease the pain.”

16. “I make excuses as to why I can’t stick with plans or go to functions when I’m not feeling well instead of just telling them the truth, that I’m having a bad day, because I don’t want to become ‘that’ conversation.”

17. “There are little things, like carrying my phone and water bottle literally everywhere with me. There are bigger things, like habitually secluding myself when my anxiety and self-disdain start to take over my mind, and often it will spiral and worsen because I feel too scared and ashamed of myself to reach out for help.”

18. “My first reaction to a vacation or upcoming trip is to think of every possible way my chronic illness could ruin it (sometimes it does), but I know the self-fulfilling prophecy doesn’t help.”

19. “Allowing my independence to become vulnerable and letting my husband care for me, like helping bathe me in the shower because my skin hurts just with the water, my body hurts to stand in the shower and I am so very fatigued, I do not have the energy to stand up. It is quite humbling, but he shows me every day he is there for me whatever the struggle may be.”

20. “I seclude myself. I keep a lot of my emotions to myself and don’t really partake in much [out of] the fear of causing a flare.”

21. “Due to brain fog or fatigue, I second-guess myself often. Was that right? Did I say that right? Did I say the right things? I used to be so quick on my feet when it came to a conversation and now I feel like I’m always two steps behind. Because of this, I try to be more aware and listen more before I speak. I try harder to be more thoughtful and less quick to judge something.”

22. “Having to overshare about my condition to have it taken seriously. I have endometriosis which causes debilitating abdominal pain and cysts, but unless I go in depth about my condition most people will just assume I have period cramps.”

23. “I apologize constantly, often for things I know aren’t my fault and I know I can’t control.”

24. “It’s becoming easier to say ‘no’ when I simply don’t have the energy to attend a dinner, do a task, etc. When I was first diagnosed with fibromyalgia, I thought I could just push through the pain and fatigue and not let anyone know how poorly I felt. This was dishonest not only to others but to myself. I’ve discovered how crucial self-care is, whether that means a nap if I need one, taking daily supplements and vitamins or politely declining an invitation to dinner. On the flip side, I take advantage of those days when I feel better but keep in mind not to overdo it or I will pay for it later.”

25. “Not cooking at the end of the day because I just hurt too bad, even though we can’t afford to eat out. I eat so much pizza it is ridiculous because that’s all that delivers.”

26. “When I’m out at a social gathering, I flit from person to person and group to group. This has given me a social butterfly persona. In truth, if I stop moving or sit, I may be unable to get back up or even have to go home. My muscles tighten up and I can’t move properly. Once I sit down, I’m finished.”

27. “Attitude checks. I will allow myself a pity party when it’s deserved, but only for a short time, then it’s time to check my attitude because it is only by way of ‘one step in front of the other’ will I get to where I want and need to be. I have to be as positive as I can not only for myself but also my family. A good outlook is how I make it through each day.”

28. “Defending everything I do. It’s a terrible thing to do. If I’m walking with my cane, I defend it. If I park in [disability] parking, I defend it. If I sleep during the day and stay up at night, I defend it. It’s a habit I want to break, but I’m too afraid to.”

29. “Seeing the value in every single day. Cherishing every opportunity that comes my way. Being motivated to do so much because I know I could lose more function anytime. Not seeing people as they appear… respecting that anybody could be going through a challenge, so showing respect and kindness to everyone, even if they aren’t kind to me. Recognizing it may just be a bad day or something unknown they are battling.”

My blog had a chronic disease, too

Apologies for being offline over the past four days. This blog and I were in computer hell…MUCH worse than any chronic disease, IMHO (in my humble opinion).

As we all know, chronic disease like ME/CFS and fibromyalgia, and conditions like oncological (Western medical) cancer treatment cause what is known as brain fog. I once was a resource for tech things where I worked and even was the on-site systems administrator for the entire network at my last advertising/PR agency.

But with brain fog resulting from the stress of trying to understand tech-speak while constantly aware the site was not working properly, I kept reading the help files and getting more and more confused and frustrated.

Tech support

My blog host site advertises 24/7 tech support. However, I couldn’t raise anyone on Sunday with the chatbot so I was limited to opening a support ticket and waiting for one of the IT guys to email me a link to the page where I originally asked the question.

The HUGE problem–even larger than the relatively simple one I was attempting to solve, occurred when a helpful tech noticed I didn’t have WordPress installed on my computer and asked if I wanted him to install it. Thinking this might be at the root of my original problem, I told him to go ahead–even though I was publishing posts using WordPress. That should have made me stop and question–if I weren’t already brain dead, that is.

Little did I know this would wipe out ALL my earlier work–posts, plugins, widgets, media saved to use later–everything. The hosting site said it would cost me an upgrade to get access to my backup files. I recalled seeing notices that I had backups, though. After playing around with things, I discovered that JetPack, one of the WordPress plugins, was performing backups, too.

The problem was I couldn’t access them. None of my usernames and passwords worked. network computer passwordNow, I’d attempted to connect my blog to their servers through file transfer protocol (FTP) when initially setting things up, but couldn’t get connected because, you guessed it, none of my username and password combinations worked. To add insult to my blog’s injury, JetPack tech support was only available Monday–Friday during business hours.

Netflix to the rescue

Realizing nothing could be done until Monday, I put it all away for dinner and then went to bed where hubby and I watched a couple of episodes of TURN, an excellent Revolutionary War series.

When I woke up Monday I knew it would be a bed day. My brain felt like there was nothing there to think about. Plus, probably from being tense all afternoon Sunday, my muscles were screaming in pain. Although I wanted to get the blog back up and running, there was no way I could do it in my present condition.

Did you know that Netflix has a new program from the UK where couples go house hunting for places in the country? Watching it all Monday afternoon as I lay in bed, I learned a lot about the British island’s geography and saw many absolutely charming cottages with thatched roofs and other unique houses. If you like HGTV and Great Britain, this show is for you! Hubby and I watched more TURN before bedtime.

I got up at 0630 Tuesday to feed Miss Em and the cats. Still felt like homemade shit, so I went back to bed and slept until noon. When I contacted JetPack tech support Tuesday afternoon they quickly responded. Unfortunately, they kept sending me great how-to articles that I couldn’t fathom.

Tuesday is when our local sangha ( a group of Buddhists) meets to meditate and then discuss an assigned reading from a popular dharma book. This meant I only had four hours to work on blog issues and fix supper. I don’t always cook, but I try to make at least one meal a day. I threw together a free-form meatloaf and cut up potatoes and broccoli to boil and steam, respectively. I didn’t make any headway on the blog issues, though.

Eureka!

The total break from my computer nightmare was just what I needed. When I sat down this morning (Wednesday) and re-read the help articles from Tuesday, a lightbulb went off in my no longer completely fogged-in brain.

I realized what I was doing wrong. Yup. Another forehead smack, with “DUH”. The key to my problem was so simple. I’d read without it registering in my consciousness, if you know what I mean.

Once I had the FTP problem solved I connected to the backup. It took less than a minute to get the blog back to where it was with everything intact. WHEW!

Moving forward

When first considering a blog, you will read things like, “Install X and your blog will be up and running in 15 minutes!” First mistake. Yes, the blog will be live with one of your posts, but none of the backroom, unseen side, of the blog will be ready. I naively thought WordPress had evolved to be easier than when it first launched a decade ago. To give the folks at Automattic (WP parent company) their due, many tasks are easier. However, most of the easy-peasy wizards that do it all for you come with a hefty price tag.

I’m doing this blog as inexpensively as possible until, hopefully, www.aswellasicanbe.com builds readership and maybe earns a few dollars to supplement Social Security disability. My goal is to share the things I use to remain as well as I can be with a chronic illness, a chronic disease and chronic conditions.

But in the short run, I need to spend quality time reading about SEO optimization, email lists, traffic-generators and a host of things I probably am not even aware of at this stage in my blogging career. This means I will likely be posting more blogs from other writers and posting on an irregular, but frequent, basis as I develop new content.

What would you like to read here? Any topics you’d like researched? (I am very good at translating medicalese to normal language.)