03.16.2018

March 16, 2018 fibromyalgia, chronic fatigue and Lyme news

March 16, 2018 #fibromyalgia, chronic fatigue & #Lyme news | Fed Up with Fatigue

1.

Medscape: Mast cell activation may underlie ‘chronic fatigue syndrome’

From the article: “New York City ME/CFS specialist Susan M. Levine, MD, also said she sees MCAS frequently. ‘I suspect 50% to 60% of ME/CFS patients have it. It’s a very new concept.'” (Mast cell activation also has been implicated in Lyme disease and fibromyalgia.)

2.

Newsweek: No strong evidence marijuana relieves chronic nerve pain, study finds

In last week’s news post, I featured an Israeli study that found cannabis was effective for fibromyalgia. This week, there’s a study with an opposite finding. (In some ways, these studies are comparing apples and oranges, but I felt the Newsweek article is relevant since one of the primary symptoms of fibromyalgia is chronic nerve pain.)

3.

FDA.gov: PDX Aromatics recalls kratom powder because of possible health risk

Attention kratom users! Some brands of kratom are being recalled because they might be tainted with salmonella. 

4.

Laura’s Pen: Could your fibromyalgia be hiding undiagnosed endometriosis? 

From the article: “One in 10 women of reproductive age suffers from endometriosis. The problem is, not all of them know it. Many of them haven’t even heard of it.”

5.

Time.com: Apple is making it way easier to access your medical records on your iPhone

From the article: “A number of big-name health care providers, including Johns Hopkins Medicine, Cedars-Sinai, Penn Medicine and UC San Diego Health, have already agreed to participate in the beta version of the program, and Apple says more are on the way.”

Mentions…

If you’ve been reading FedUpwithFatigue.com for a while, then you know I’m a big fan of the Quell pain relief device. (You can read my review here.) In celebration of National Sleep Awareness Week, I was happy to contribute a testimonial to the LivingQuell blog on how Quell helps to improve my sleep.

New YouTube video…

Vitacost haul for fibromyalgia and chronic Lyme

In this video, I share my recent Vitacost order of supplements, food items and personal care products. 

An apology…

I’m sorry I’ve been MIA on posting new articles the past couple of weeks. It’s felt like I’ve been dealing with one thing after another. The herniated disc in my back has been acting up, and that has led to a flare of Lyme/fibro symptoms as well. (Multiple snow/rain storms hasn’t helped!) I’ve also been shuttling a couple of sick kitties back and forth to the vet, and hubby has been nursing a cold. Amidst all of that, I’ve had a frustrating case of writer’s block. I did finally finish a blog post yesterday, so I will have a new article for you early next week.

Comments

  1. Vicki Patsdauter says:

    I was diagnosed with fibro 5 years ago. My rheumatologist has tried all the usual with me, and none seem to help, or at least not for long. I have two questions:
    1. I’ve been told by a friend that a pain management dr might be better suited to help me deal with the pain. I’d like to hear your thoughts on this (I also have OA).
    2. Do you think those of us who have been diagnosed with fibro would/should get tested for Lyme Disease as well? Would this help in how it’s treated? I still get flareups about every 2-3 weeks that lay me flat for several days.

    • Donna Gregory/FedUpwithFatigue.com says:

      1. I think it’s worth it to see a pain management doctor just to see what options might be available for you. Sometimes they are more open minded and more comfortable w/ pain remedies than regular doctors. I would definitely go see one if that is an option for you. They may or may not be able to help, but you won’t know unless you try.

      2. Yes, I would definitely pursue Lyme disease testing. It’s important for us to not just accept the label of fibromyalgia, but to try to figure out what is causing it. Lyme is a very common underlying cause for fibromyalgia symptoms. Unfortunately, the standard testing available through your doctor’s office (Labcorp, Quest, etc.) is highly inaccurate. It only catches around 50% of Lyme cases. So, I would start by asking your doctor for that standard test (called the western blot) b/c some people do test positive using it, but please understand that if you get a negative result, you could still have Lyme disease! That happened to me! I’ve had the standard testing at least a half a dozen times, and it still comes back negative even though I definitely have Lyme based on other testing methods.

      There is better testing on the market through outside labs like iGenex and DNA Connexions. You will have to pay out of pocket for this testing, but it is worth every dollar to get an accurate diagnosis. You can get a very basic Lyme test from iGenex for around $250. If you want specifics on that, you can email me or reply back here and I can send you a link to the iGenex price list w/ the line items you’re looking for.

      I would suggest reading this post: https://fedupwithfatigue.com/lyme-disease-and-fibromyalgia/ It discusses the link between fibro and Lyme and how to get properly tested and evaluated.

      Also, this one on common Lyme myths: https://fedupwithfatigue.com/fibromyalgia-lyme-myths/

      Here’s a questionnaire developed by Dr. Richard Horowitz, one of the country’s leading Lyme doctors, which will tell you your risk of having Lyme. People w/ Lyme generally score high on this questionnaire: http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

      I hope this information helps. After my own diagnosis w/ Lyme in 2016, I feel very passionate about educating my fellow fibro warriors about Lyme and how it can cause/mimic fibromyalgia. I suspect many of my fellow fibro warriors have undiagnosed Lyme and don’t know it. It’s a real shame since Lyme is treatable and people can and do recover from it. It’s rare to hear the same about fibro.

  2. Pam Collins says:

    Donna, I am curious if any of your readers have been tested for fibro with the new blood draw test???

    Thx for helping us with your so very informative newsletter!!!

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, I know a couple of fellow bloggers who have taken the test, and it came back positive. I have a few people in my Facebook group who have had the test and tested positive too. I don’t know of anyone w/ a negative test result at this point. I have reservations about the accuracy of the test, but if insurance picks up the cost, I guess there’s no harm in having it.

  3. Aidan says:

    With regards, the MCAS diagnosis the NIH/NIAID is now studying this connection but not yet conclusive yet! The reason is they now have found multiple copies of Tryptase Gene called (HATS) Hereditary Alpha Tryptasemia Syndrome if one has a tryptase Normal of 10 in blood testing anything they say above 8 is very

    highly likely multiple copies of the tryptase Gene inherited at Birth from each parent some have 2, 3 or 4 copies of this gene…They will soon release this Genetic test from a Houston diagnostic lab the Doctor involved is Dr. Joshua Milner from NIH/NIAID their work was also done together with a Team here in the UK

    at Manchester Hospital they Published I think October 16, 2016, online in Nature Genetics. Dr. Milner has also put out a few awareness Videos on YouTube & Dr. Anthony Fauuci put out a Press Release as well back in October 2016…There are 2 Groups now on Facebook they start with the Names ‘Hereditary

    Tryptasemia’ in their Groups some have also tested Positive I hear they will do more testing maybe 1,000 patients & Family members as well…A simple blood test for tryptase at ones Doctors could say a lot if even Normal or elevated it can be also done online Private labs the UK for about £99.00 it is not the Genetic test

    now found by the NIH/NIAID they also ask once Positive that all other members of Family have their tryptase levels tested…I know one Girl her tryptase blood test was 9.6 she was also tested by the NIH/NIAID she has a duplicate copy of (HATS) so do some of her Family members as well not all. I have

    also seen one Family all have duplicate copies and only one Female member has also (CVID) Common Variable Immune Deficiency she needs for life IVIG…(MCAS) numerous were diagnosed with this condition later told they do not have it they were misdiagnosed…(HATS) is now found in EDS ME/CFS Fibro IBS etc it

    could potentially turn out to be the Causative issue involved & we may have a final diagnostic test…I have seen it in Lyme patients diagnosis as well…Was it Lyme disease all along I doubt it very very much it now looks like (HATS) is causing all these Genetic issues but I still feel being Poisoned by Antibiotics made

    things worse in some or all…Fell better soon thanks for your Post xx hugs xx Aidan

  4. Bernadine says:

    Thank you Donna for your blog posts! They have provided me with some really great information that I’ve been able to pass on to others I know who have similar medical issues.

    I disagree with the Newsweek article that cannabis doesn’t work for fibromyalgia. I live in Florida, and was able to receive a medical card to use medical cannabis. My doctor has me take high CBD/low THC orally, and I have noticed a difference. I have been able to completely wean off of Gabapentin, and I’ve reduced my need for Norco to the point that I only take it if I’m in really bad pain. I’m less anxious, and have been able to slowly get back into living a more active lifestyle, provided I don’t curse myself by over-doing things. I still have daily pain but not to the degree that I did prior to starting on cannabis. The only drawback is the cost and the fact that I cannot take it with me whenever I travel out of state or when I’m on our local military base. I’m still very much in the early stages of treating with cannabis and am trying to learn as much as I can in the hopes that I can provide guidance to others who may want to try this as a treatment option.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’ve found it helpful for pain, too, and so have many other people.

  5. Sandy says:

    Thank you for all your help research you have been doing. I believe we all appreciate your efforts. I hope your health stabilize soon. Gentle hugs.

  6. Jennifer says:

    Thank you Donna for all that you do. I look forward to reading your blog as you have very sound and resourceful information. No need to apologize, you have Lyme and I get it 100%. I have Lyme too. I was finally diagnosed this past November. I know what you are going through and I can be challenging. I am praying for you and your family. I am thankful for your blog. Keep up the excellent work Donna.

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