07.12.2019

July 12, 2019 fibromyalgia and Lyme news

1.

Fibromyalgia News Today: Glial cells overly activated in brains of fibromyalgia patients to promote inflammation, study suggests

Yet another research study is showing brain inflammation and the involvement of the immune system in those with fibromyalgia. So, the question is, if we go farther upstream, what’s triggering the immune system? For some of us (but definitely not all of us), the answer is chronic Lyme.

2.

The New Daily: Do vitamin drips really work? The evidence says no so save your money and eat real food!

The tone of this article is really negative, but vitamin infusion therapy is a topic that comes up in my Facebook fibromyalgia group sometimes with mixed responses. Some people claim these infusions help them with improved energy, and some say they do nothing. If you’ve had vitamin infusions, I’d love to hear about your experience in the comments section!

3.

Lyme Disease Association: U.S. House actions on Lyme and tick-borne diseases |1 passed and 1 blocked

This is a quick update from the LDA on federal Lyme disease legislation now making its way through Congress. As usual, there’s good news and bad.

4.

iGenex.com: The high-cost of tick-borne disease misdiagnosis

iGenex has published the results of a 2018-19 survey of Lyme disease patients covering issues such as the challenge of diagnosis and expense of treatment. There are several great stats that are compiled into an attractive 1-page report for those who like to raise awareness!

5.

The Reluctant Spoonie: 5 free things to do when you’re stuck in bed

Katherine shares some of her favorite things to do when flaring.

Replay…

Ashok Gupta, creator of the Gupta Program and the Meaning of Life Experiment, hosted a free webinar on “how to overcome the struggles of being an empath” earlier this week. Here’s the replay and the Q & A that followed the webinar.

I’ve observed over the years that a lot of us with fibromyalgia and similar conditions – myself included – tend to be highly sensitive people or empathic, so I thought Ashok’s webinar might be helpful for some of you.

(Read more: How to know if you’re an empath)

On a related note, I’ve been working my way through the new Gupta Program 2.0 and will be doing a review in the next couple of months. The Gupta Program is a brain retraining program that helps to reset the nervous system and facilitate healing from illnesses like fibromyalgia and chronic fatigue. You can read my review of the original Gupta Program here. The 2.0 version is similar except that all of the material is now streamlined and much more organized and accessible on a new online portal. I feel like I’m making progress, but as with the original program, it is a time commitment, and you get what you put into it!

New fibromyalgia book…

(This section contains an affiliate link.)

Robin Dix, columnist with Fibromyalgia News Today, just released a new book, “The Many Faces of Fibro: Short Stories By Those Struggling Daily with Fibromyalgia.” Order it on Amazon.

July 12, 2019 fibromyalgia & Lyme news | Fed Up with Fatigue

Comments

  1. Cheryl Jensen says

    You have a link to an article entitled 10 Causes of Fibromyalgia. Please do not participate in disseminating misinformation. The cause of FM is unknown. Those listed in the article are disorders that cause similar symptoms or can exist alongside FM, but they are not a direct cause anymore than IBS is a cause. On the other hand, I appreciate the tip about empaths. I had not connected the two, but in hindsight, given the connection between FM and neural overload, it makes sense.

  2. I’m not a sufferer myself, but my wife has Fibro. Having experimented extensively with vitamin and mineral supplementation, I have three strongly held opinions based on medical advice, anecdotal evidence and personal experience (as a late-middle-aged newcomer to extreme endurance sport):

    1. Only supplement to address deficiencies. More of a vitamin than you need either goes to waste (in the case of water-soluble vitamins like vitC that get passed straight through), or may become harmful (when retained and accumulated as fat-soluble vitamins like vitA are).

    For example there are several sources of omega oils. A capsule containing Omega 3+6+9 should not be chosen over – say, for most Westerners – pure Omega 3. (Here my understanding is…
    Omega 3: an effective antioxidant, in short supply in a diet containing a lot of processed foods and therefore probably a worthwhile supplement to take
    Omega 6: you’re unlikely to need more and too much is harmful, so avoid supplementing
    Omega 9: you should be making enough of your own, so don’t bother supplementing.)

    2. Work hard to find out what exactly you need. “Official” (FDA) figures might be a place to start but are not the final authority. Your needs depend on age, gender, lifestyle etc. My GP put me on a supplement for a time and when I announced that it was a waste of money because I had felt no benefit, he made two insightful points that have helped me in my subsequent (and ongoing) search…

    a. “Maybe you didn’t notice a benefit when you started, but did you pay attention to how you felt after you stopped?” (Spot-on! I remembered experiencing a significant “slump” in the following week and just assumed that I had been flirting with a seasonal cold.)

    b. “How long did you give it?” Things like nails and hair grow slowly and visible changes (both good and bad) are often missed. This can be equally true of changes in brain chemistry, the immune system, endocrine system, joints etc. It is absolutely essential to take a long-term view, be patient, attentive, keeping notes (and referring back to them) over weeks and even months.

    3. Quality: be selective. The less synthetic/processed the better. Slow-release formulations often aid absorption/uptake and increase the effectiveness of lower dosages (not to mention reducing common, unpleasant side-effects of concentrated, high-dosages, like nasty after-tastes, flushing, stomach cramps etc).

    Proper eating of whole foods is always better than eating rubbish and then trying to compensate with pills. Would you knowingly buy dirty fuel for your car and then additives to keep its injectors clean?

    Bombing your system with an overdose of anything may have noticeable short-term effects, but never long-term benefits. Treat any megadose miracle with suspicion and get decent, !!!qualified!!! advice before committing.
    ———-
    Bottom line: There are (in most cases) no silver bullets. Vitamin supplementation can be miraculous if your problem is caused by a vitamin deficiency, but mostly it is just one potential weapon and should be kept where it belongs – within a holistic armory that addresses environmental stressors, habits and routines, sleep patterns, exercise, hygiene, nutrition etc.
    ———-

    • Cheryl Jensen says

      Nicely put. It surprises me how many people don’t realize that all supplements are not created equal. However, vitamins are not regulated like pharmaceuticals and quality control is somewhat lax. Studies have shown that OTC supplements can actually contain very little of whats indicated on the label. I would also add that it’s important to track your own numbers. Doctors often rely on the lab’s analysis. If their report doesn’t flag it, they assume it’s ok, but those reports ignore borderline results. By tracking my own, I was able to identify persistently low, though within the normal range, potassium, B12, and magnesium, even when I added foods rich in those nutrients on a daily basis. There is a difference between not getting certain nutrients and not absorbing them, and that can impact the type of supplement you need.

  3. Patricia Walter says

    As far as IV vitamins. I did one every week for 8 weeks in a row and now I do one every 2 weeks. The place I go to does a Spectra Cell analysis as a service then creates a custom drip depending on what it shows you are absorbing or not. They also go by your symptoms. They also have other regular drips they do..i.e. meyers drip, energy drip etc. etc. I can tell you I went in for the first drip feeling awful. One of biggest complaints are flu like symptoms and feeling so crappy I am in a bad mood consistently. I left feeling good. I had a appetite and my mood was altered. I had a custom drip though based off my testing and my symptoms. I have had one time maybe where I didnt see a difference and in general it’s bad on your veins to get them regularly. The place i go does another Spectra Cell Analyze 6 months later to see changes. I love them and will continue to get them.

  4. Robin Dix is a wonderful writer who offers very practical advice regarding living with fibromyalgia. Unfortunately, you now have to pay a subscription fee to read her writings..so I have missed hearing her advice, etc. I plan on ordering her book.

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