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'The Science Isn’t Settled on Chronic Lyme' by Rehmeyer and Dusenberry
Thanks, that is a great write-up. This review of Khakpour's book is a nice non-science companion piece focusing on the social dynamics of chronic invisible disease (not only Lyme), harking back to Virginia Woolf, Susan Sontag, etc. It's an oddly comforting read because Khakpour, Rhemeyer...- Paw
- Post #2
- Forum: General Discussion
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Viral reactivation "throwing a wrench" in the brain
The researchers of this newly published Alzheimer's study say they had no intention of focusing on dormant herpes viruses but the data kept "screaming" for their attention. While they don't believe the viruses are directly causing the disease they think certain conditions create complex...- Paw
- Thread
- Replies: 2
- Forum: Other Research
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Rethinking Ehlers Danlos Syndrome
Good to know! Lots of good question marks. I've searched several times and found little info on diastolic-specific BP problems. I was, but not incredibly so. Duloxetine helped considerably, so I don't think about it much anymore. ... Fascinating. You've set me off to do more reading. For...- Paw
- Post #8
- Forum: General Discussion
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Rethinking Ehlers Danlos Syndrome
Fascinating, thanks for the notes. I'll try to look it up later, but I don't recall 23 and Me covering EDS -- I could be wrong -- my notes don't show it flagged for me anyway. You've reminded me of so many connections that piqued my interest in EDS -- decades of TMJ, decades of IBS (diagnosed...- Paw
- Post #5
- Forum: General Discussion
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Rethinking Ehlers Danlos Syndrome
Here's a question: how might confirmation of EDS affect your disease management/treatment? I ask because EDS has been on my radar for a couple of years -- I even have suspicious hypermobile symptoms along with a lot of other possibly related clues. I've known about the different forms, but two...- Paw
- Post #2
- Forum: General Discussion
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Low HRV and Getting Lower!
Hi Melanie, lot's of similarities here. I've become a lot more aware of my breathing over the past 6 months or so of tracking HRV, so it's been pretty helpful, and I'm still hopeful that my numbers may budge over the long term. I'm gaining confidence in my own ability to mitigate unnecessary...- Paw
- Post #3
- Forum: Heart Rate Variability for Better Health
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High THC Cannabis - Sleep Inducer and MCS Buster - Who Knew?
Xhiaane, no, I think the research so far has been pretty clear that marijuana is risky for developing brains. Unless there are new findings, I would suggest waiting about 22 years before exposing your child to THC. Edit: I'm assuming two things that I could be wrong about: CBD meds still have... -
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High THC Cannabis - Sleep Inducer and MCS Buster - Who Knew?
I've tried a lot of strains too, but so far I keep coming back to the modest Blueberry as most reliable overall (80% indica dominant; medium THC at 16%, and high CBD). Still trying to figure out the deal with CBD better -- but, as you say, there are so many other variables as well. Recently... -
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FM Patient Won't Apologize for Having Fun Once in a While
This is such a weird, thorny problem -- seen in so many manifestations. Like people with disabled parking permits getting yelled at because they "seem" fine. After reading one such story the other day, half the comments were from people convinced that most permits were given to cheaters. There...- Paw
- Post #2
- Forum: General Discussion
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High THC Cannabis - Sleep Inducer and MCS Buster - Who Knew?
You're pointing us toward rather sensational headlines, but Dr Raber (the chemist who has been most often quoted in this debate) is concerned about increasing our understanding of the many differences between strains, growing conditions, ingestion differences, and, importantly, patient... -
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High THC Cannabis - Sleep Inducer and MCS Buster - Who Knew?
Your first sentence is totally, totally misinformed. Careless, actually, since it might stop some novice users from getting help because the one strain they tried made their symptoms worse. It's crucial to find the right strain for your health needs, as different strains can have amazingly... -
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Sara Myhill On Why Alcohol Intolerance is so Prevalent in ME/CFS
This piece is discussing chronic pain and FM, not ME, but it confirmed for me alcohol's potential benefits. I recently gave up my daily early-evening drink because I seemed to be having GABA balance issues. After abstaining for a month I realized my sleep was no better and my evening...- Paw
- Post #8
- Forum: ME/CFS and FM News
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High THC Cannabis - Sleep Inducer and MCS Buster - Who Knew?
Can you share more info about the strains involved? Presumably indica dominant? I get a lot of benefit from cannabis, but it's tricky to find the right dosages and strains for good sleep. Even low-dose tinctures can keep me awake if I take them too close to bedtime. They can make me... -
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Gluten Sensitivity Increased in ME/CFS: Celiac Disease Not: Take the Poll
Yep, I've looked at this pretty closely. After a couple decades of IBS (as in 10-20 BMs per day) blood tests showed one possible marker for celiac. Endoscopy, however, came up clean. Over the past few years I've given up gluten except for some trial periods. Each time gluten clearly caused my...- Paw
- Post #2
- Forum: Diet and Improving Your Gut
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NIH Spending in 2017: the Good and the Bad of It
And for 2018... Luckily we have a president with no attention to detail, so he surely didn't realize Congress was ignoring his plan to cut NIH by 18%. Nature.com has a nice summary of how well science will fare this year. They warn, though, that the good news could be temporary, seeing as Trump...- Paw
- Post #2
- Forum: ME/CFS and FM News
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Clonidine
I take .2 every night. I haven't noticed a big difference, except that it does help me sleep a little better (and it makes me too groggy to take during the day). I have high blood pressure, though, and I'm not tuned into your concern about needing the sympathetic nervous system to kick in...- Paw
- Post #2
- Forum: Dysautonomia - Problems Standing, POTS, NMH, etc
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Wim Hof Method. Regulate your own autonomic nervous system. (No Woo Woo)
This does sound related. Have you gotten to the cold showers yet? As you say, probably best to go slow, especially since the method toys so much with the sympathetic nervous system. I've been breathing a lot lately too, trying to raise my average heart rate variability. Some studies have shown...- Paw
- Post #2
- Forum: General Discussion
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Fibromyalgia FMS and spinal fluid pressure dysregulation
@Merida were you ever treated with acetazolamide for your Tarlov cysts? The authors of the new study hint that it might be worth looking at for FM and other conditions. The full text is here. It's filled with intriguing possibilities for people like me with apparently neurological etiologies...- Paw
- Post #5
- Forum: FIbromyalgia and Pain Research
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Why?
You're fortunate to have such a handle on your disease. Does it make disease management more predictable and consistent? I'm optimistic that one day I'll have such certainty with my own disease, but I've got a long way to go. No snark, just sharing my own status quo. Your term, "mental...- Paw
- Post #7
- Forum: General Discussion
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Better understanding of ANS dysfunction and trauma
That's my thinking. Especially since my baseline breathing is so miserable. Can't hurt to work on it. (Although over-breathing has it's own dangers, apparently.) The science behind all this is still relatively new, so our own observations probably constitute part of the overall research. One...- Paw
- Post #8
- Forum: Stress Reduction, Pacing and Exercise
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![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
