Search results

Not to hijack the thread, but due to my personal circumstances, I don't have a choice. It's Kaiser Permanente or no medical insurance. From my perspective, I feel fortunate to have Kaiser.

Kaiser Permanente is similar. Their recommendations for GET and CBT were made less prominent over the summer, but they are still there. Kaiser Permanente has 11 million members. I suspect changes won’t happen to these major websites until the CDC updates their website for medical...

Television interview with Donald Watts, who had to give up a basketball career due to Chronic Fatigue Syndrome. His recommendations are mostly lifestyle and dietary changes, such as giving up sugar and gluten. He also has a "team" of medical specialists, including a chiropractor. Also, an...

"lawyer screech do tort". Sorry Doctor Esther Crawley.

As an interesting side note, acne bacteria can infect the brain, and the infection generally goes unrecognized. Yet another "stealth" pathogen. https://www.livescience.com/9299-acne-bacteria-infect-brain-body.html

Tuller must be delighted. Every time he seems to be running out of material, Crawley graciously tosses him a new juicy story to run with.

This article was from a few months ago, but I just saw it. It's about multiple sclerosis, but perhaps something useful can be gleaned from it. Original article: http://www.nejm.org/doi/10.1056/NEJMoa1608889 Is anyone aware of any minocycline studies for ME/CFS?

From a New York Times article on "What Not To Say To A Cancer Patient".

Yes, I've experienced stumbling type ataxia episodically going back 40 years. The symptoms are worse during ME/CFS relapses. For the past 15 years, the episodic ataxia has been regularly accompanied by difficulty keeping my eyes open as I walk. I've blindly run into a few things.

In my anecdotal experience as a (misdiagnosed chronic recurring) depression patient, I saw the definition of depression broaden dramatically during the 1990s. It likely wasn't coincidental that a slew of new pharmaceuticals for depression became available around that time. Many psychiatrists...

The FDA also affirmed they have a "commitment to making treatments available to patients with rare diseases". (ETA: Which is a noble goal, as many rare disease have no treatment yet.) What about an FDA commitment for non-rare diseases that don't yet have a treatment?

http://www.raredr.com/news/fda-approves-mepsevii "'This approval underscores the agency’s commitment to making treatments available to patients with rare diseases,' said Julie Beitz, M.D., director of the Office of Drug Evaluation III in the FDA’s Center for Drug Evaluation and Research...

Secondary-Progressive (relapsing-remitting, but general course of worsening) probably best describes my ME/CFS. However, in addition to the "relapsing-remitting, but general course of worsening", I've also had a number of "occasional sharp drops in wellness that are permanent". After the "sharp...

Was surprised to read this as well. I'm definitely an LDN responder, yet my ESR (last measured 6 years ago) is only 5mm/hr, not the "over 40mm/hr" Younger says predicts response. Perhaps those with lower ESR need more LDN to get a response, if they tolerate it? I need 9mg/day LDN. According...

It's probably worth mentioning the recently revised CDC website, which now states (emphasis mine):

Interesting drug table. Several items on that list I would like to try, but insurance won't pay for it, e.g. Valcyte, IVIG, IV saline, Rituximab. Gotta be careful with the stimulants and antidepressants; they can make things worse. The CDC website now warns: "doctors should use caution in...

The Open Medicine Foundation B12 study a couple years ago was 15mg methylcobalamin injected every other day and 15mg L-methylfolate (MethylPro). As a trial participant, I can't say I saw any benefit. After the trial, I switched to sublingual methyl B12 for a while (5mg). Eventually, I stopped...

I only went on about PANDAS because I suspect that I had it recurrently from kindergarten into adulthood (never diagnosed, never treated, Strep A). Now that I've read @Arnie Pye 's detailed description, it's probably not very relevant. Carry on. ;):) And I hope you find answers.

Should add that adult PANDAS is a real thing and very under diagnosed. Strangely, it seems that it's only a few psychiatrists that are diagnosing it. Primary care docs aren't looking for adult PANDAS. But the question of whether one can get PANDAS as a child, and left untreated, have it persist...

Whether Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) can persist into adulthood, the answer is uncertain: