04.10.2019

First quarter 2019 fibromyalgia & chronic Lyme news + a health update

Fibromyalgia news & research

Medical News Today: Groundbreaking blood test detects fibromyalgia

Ohio State University researchers have detected “molecular signatures” in the blood of fibromyalgia patients. The finding could lead to a third fibromyalgia blood test. You can read about two other fibromyalgia blood tests here and here.

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Pain News Network: Men needed for fibromyalgia vaccine study

A much-anticipated update on the EpicGenetics study to see if the BCG vaccine, used for more than a century to prevent tuberculosis, can be repurposed to eliminate fibromyalgia symptoms. You can read more about EpicGenetics’ plans here.

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EurekAlert: Fibromyalgia misdiagnosis rates are high

From the article: “Recent studies have suggested that most people who have been diagnosed with fibromyalgia by physicians may not actually have the condition. A new Arthritis Care & Research study found that overall agreement between clinicians’ diagnosis of fibromyalgia and diagnosis by published criteria is only fair.”

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Richard Semelka, MD: Are most cases of fibromyalgia really gadolinium deposition disease?

This article will be of interest to those who developed fibromyalgia after having an MRI test with contrast. Gadolinium, a heavy metal commonly used in contrast, has been implicated as a possible trigger for fibromyalgia!

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Fibromyalgia News Today: High cerebrospinal pressure links three chronic pain disorders, including FM

I’ve become intimately familiar with high cerebrospinal pressure (see my health update below), and I can testify the symptoms feel EXACTLY like fibromyalgia. If you get daily headaches – even if they’ve been labeled as migraines or tension headaches – please read this article! This could be the underlying cause for your fibromyalgia symptoms! Not many doctors know about this condition so it is easily overlooked.

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MedicalXpress: Extract from soursop leaves can prevent the symptoms of fibromyalgia

From the article: “‘The consumption of extract of Annona muricata L. leaves in pharmaceutical form and in the correct dosage can reduce the chronic pain, anxiety and depression that accompany fibromyalgia. This extract comes from the traditional preparation using decoction,’ says Ana María Quilez from the Medicinal Plants research group at the University of Seville.”

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Fibromyalgia News Today: Cannabis may help reduce pain in fibromyalgia patients, another study finds

From the article: “Pharmaceutical-grade cannabis may have some pain-reducing effects in fibromyalgia patients, but those results vary depending on the chemical contents of the specific plant.”

Lyme news & research

Valneva: Valneva reports positive initial booster data and final phase 1 data for its Lyme disease vaccine candidate (Scroll down to the 1/31/19 press release, and click on the PDF download.)

Data from the ongoing phase 2 trial is anticipated next year.

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Prohealth: Combination antibiotic therapy with dapsone improved eight major Lyme symptoms in study on 200 people

New research findings from Dr. Richard Horowitz’s dapsone protocol!

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Johns Hopkins Medicine: New scan technique reveals brain inflammation associated with post-treatment Lyme disease syndrome

From the article: “‘What this study does is provide evidence that the brain fog in patients with post-treatment Lyme disease syndrome has a physiological basis and isn’t just psychosomatic or related to depression or anxiety,’ says John Aucott, M.D., a senior author of the new paper, associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Research Center.”

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LymeDisease.org: Nerve damage shown in patients with chronic Lyme symptoms

From the article: “The results of the study are striking. All 10 participants tested positive for [small fiber neuropathy] and decreased blood flow to their brains.”

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WebMD: CDC to start tracking ticks as diseases rise

Lyme was discovered in the U.S. during the 1970s. It’s appalling that it’s taken the Centers for Disease Control and Prevention this long to actually start tracking their movements. Shame on the CDC!

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Lymedisease.org: Bartonella and sudden-onset adolescent schizophrenia

Most people don’t realize chronic Lyme and its co-infections like bartonella can manifest as mental health disorders. I included this case study in the Lyme category, but if depression, anxiety or other mental health issues factor heavily in the makeup of your fibromyalgia or chronic fatigue symptoms, it may be worth it to get a GOOD Lyme test (NOT the test used by most doctors offices).

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General health & chronic illness related headlines

Live Science: Inactive ingredients in drugs may be less inactive than you think

The “fillers” in your drugs and supplements could be triggering “allergic reactions or other symptoms of food intolerance,” according to a new study.

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RawlsMD: How much CBD oil should I take? (YouTube video, 5 minutes)

From the video description: “Dr. Bill Rawls explains why the dose varies depending on your desired benefit, plus how to figure out the right amount for you.”

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Pain News Network: Future pain pills

A summary of some of the new pharmaceuticals under development for pain.

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nabilinho: What your symptoms mean (YouTube video, 9 minutes)

Why you’ll never heal and recover if you’re just treating symptoms.

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A Chronic Voice: Best tips for preventing a pain flare (from 40 people with chronic illness)

Lots of good reminders here!

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Melissa vs. Fibromyalgia: 22 ways to increase your energy

What’s your favorite strategy for reducing fatigue? Share in the comments!

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Psychology Today: 5 dilemmas faced by the chronically ill as they age

Because all of us are getting older …

First quarter 2019 fibromyalgia & chronic Lyme news + a health update | Fed Up with Fatigue
Health update aka where I’ve been since last July

Oh boy, the past 9 months have been a mixture of frustration, uncertainty, fear, healing and growth. I’ve shared periodic health updates on my Facebook page the past few months, but this is the first time I’ve posted here on Fed Up with Fatigue since last October. For those who don’t know, I developed a cerebrospinal fluid (CSF) leak on June 30 last year, which caused me to be bed/sofa bound for 7+ months.

Initially I was misdiagnosed with tension headaches. It took three neurologists, five MRIs, a cisternogram and a CT myelogram to finally confirm I had a CSF leak. I had two epidural blood patches locally to plug the hole, but both patches blew within a few days due to rebound intracranial hypertension (RIH). My local doctors did the best they could, but frankly they were clueless about how to treat CSF leaks and blood patch complications so I ended up seeing a CSF specialist at Johns Hopkins Cerebral Fluid Center in Baltimore in November.

In early January, I had a third blood patch. This time, my physician at Hopkins added fibrin and glue to the blood for more durability. Because I had multiple cysts on my spine, he performed five separate lumbar punctures and injected 67 cc’s of blood/fibrin/glue at various locations along my spine. When he briefed my primary doctor at Hopkins on the procedure, he said he took “heroic” measures to patch my leak, and I am so glad he did!

I spent a couple of days in the hospital to be monitored for RIH and another three weeks at home on bed rest where I could only get up to use the bathroom and eat.

I did end up having RIH as a complication from the third patch, which required several weeks of taking a diuretic medication. Unfortunately the medication came with lots of side effects, so I weaned off of it at the end of February.

At this point, I am still having daily RIH headaches, but they are not as debilitating as the headaches from the CSF leak so I can function and finally return to work! I’m just so grateful to be back on my feet again after having to lie horizontal for 7+ months. I will never take my mobility for granted again!

My doctors and I are taking a wait-and-see approach to my treatment. We’re hoping my body will eventually normalize my CSF pressure on its own. The daily headaches do seem to be gradually getting better as time passes or maybe I’m just getting used to them. I’ve been told I may need to eventually go on a medication like Topamax to help manage them, but for now I’m trying to give my body the time and space it needs to heal by itself.

You’ll notice this post includes fibromyalgia and chronic Lyme news for the first quarter of 2019. I did that because I’ve been out of commission for so long, and I wanted to make sure you guys were updated on the latest happenings in the fibromyalgia and Lyme communities. I will be resuming weekly news posts soon.

Also, because I was out of work for more than nine months, I am way, way behind on publishing blog posts. Normally, I only publish twice a week on Fed Up with Fatigue, but there may be some weeks when I need to increase that to three times a week. Please know this is just a temporary thing. I do not want any of my readers to feel overwhelmed by my emails so I will return to a twice a week publishing schedule as soon as I’ve dug out from the backlog. 🙂

I missed you guys so much, and I’m happy to be back!

(The following sections contain affiliate links!)

The Best of Chronic Lyme Disease Summit

The Best of Chronic Lyme Disease Summit starts Monday! Register for free here!

New CBD oil partnership

Almost every week, I’m asked for recommendations on hemp CBD oil brands since I’ve written several CBD-related articles on Fed Up with Fatigue. I completely understand why people are looking for guidance. CBD is not cheap, and there are lots of companies ripping people off with inferior products.

Because I receive so many questions about hemp CBD, I’ve decided to partner with Frida Botanicals as an affiliate. Frida Botanicals is owned by Dr. Ginevra Liptan, a fibromyalgia specialist who also has fibromyalgia herself. I’ve worked with Dr. Liptan on a couple of different projects over the years, and I trust in her expertise and ability to produce superior CBD products that actually work! Of course, I’m also thrilled to support a small business owned by a fellow fibromyalgia warrior!

In addition to CBD tinctures, Frida Botanicals carries CBD muscle balm and magnesium lotion.

Learn more about Frida Botanicals.

Learn more about CBD and how it can help fibromyalgia and chronic Lyme.

Check out Dr. Liptan’s CBD-related videos on her YouTube channel.

That’s it for now! I’ll be sending you a new article next week!

Comments

  1. Hi Donna,
    Topomax is kind of a miracle drug for those of us with Chronic Daily Headache (I’ve had a headache since I was 7 years old – super fun, right?)(traumatic brain injury). It worked great for me for about 8 months, then I had to up my dose, but still… Another perk, I’ve lost almost 35 lbs in the 3 years I’ve been on it, because I *feel* well enough to move around (plus I crave water and celery, of all things!?!). I still have daily headache cycles where I just can’t kick it for days, but it’s usually due to an illness or infection.

    I hope your newest patch holds, and that you get some of your life back soon. I’m glad you’re hanging in there.

  2. So happy to have you back Donna!
    I knew something had to be terribly wrong for you not to publish your newsletter.
    I so much appreciate all the wealth of information that you have provided regarding FM & Lyme.
    You are in my prayers as you manage your CSF.

  3. Elizabeth Bolton says

    Thank you times a million for this update and for all the work you do on behalf of all of us. I’m impressed with your upbeat spirit and your ability to synthesize and present all this info in spite of your own health challenges!
    I recently got the Frida muscle balm. It’s too early to say whether it’s helping or not, but I am glad to have it from such a great source (I have Dr. Liptan’s book as well!).
    Again – so appreciative of you, Donna.

    • Donna Gregory/FedUpwithFatigue.com says

      Thank you so much for your kind words. I’m happy to be back! I’m very curious about how the muscle balm works for you. Keep me updated!

  4. Get really well soon, you have been missed..jeanx

  5. Hi Donna
    Glad you are back. I have missed your newsletter.
    Hoping things will work out better for you now.
    Best wishes

  6. Maureen Mollico says

    Donna!! You have been on my mind for awhile, realizing that you have been missing 🙂 and therefore I missed you! I last knew months ago that you were having some problems and I’ve been meaning to shoot you an email for months but I too took a left turn with my health for 5 months. I’m newly on the mend also.
    Anyway… you are so brave!!! I have had a CSF leak and one blood patch in the past so I know what that’s like but…you have had to endure toooo much!!! God bless you girl!!
    It is so wonderful to have you surface but please…take it slow coming back.
    You have done an awesome job with these updates! I’ve learned so much from you! Thank you!
    But, take time to breathe, rest and don’t overwhelm yourself. One day at a time Warrior!!!
    Keeping you in my prayers. Maureen Mollico

    • Donna Gregory/FedUpwithFatigue.com says

      Thank you for the warning! I’ve definitely been taking it slow. As challenging as the last 9 months have been, I learned so much including the importance of rest and reflection. I’m hoping to write more about those lessons in the near future. So glad to be back and to be interacting w/ you guys again! Hugs to you!

  7. Wow. How lovely it was to see an email from you today! You are an amazing woman. Thank you for what you do.❤️

  8. Marsha Vomastic says

    Wonderful that you have partnered with Frida Botanicals! I have been using their products for several months and it is so good to have a source I can trust. It is a jungle out there when it comes to CBD oil!

    • Donna Gregory/FedUpwithFatigue.com says

      Yes, it is a jungle for sure! When I heard Dr. Liptan was putting out her own brand of CBD, I knew she would do it right! I’m glad you’re getting good results w/ her products.

  9. Thanks for the mention, Donna!

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