Search results

I used to bike about 20K every day without a problem. When I was looking for fodder to fight the insurance company I paid for two consecutive days of CPET testing at an educational facility that normally tested high performance athletes. The results were disappointingly consistent across the two...

I was on keto for over a year. I recommend getting a keto breath meter. They are under $100. They take all the guesswork out of knowing how far you are into ketosis. The big advantage is very quick feedback about the food you're eating. For instance, you can eat an apple and see if it...

I knew a had a vague recollection.... Naviaux did a very small study treating autistic children with suramin. He later moved on to the cell danger response and ME/CFS. That was around 2017.

I was late realized at 63. I agree that one of the defining differences between the two is PEM, which I've never seen mentioned with autism. In my case, the realization about autism came when I asked myself why I was so insistent/consistent about exhausting myself with exercise routines when...

Merged thread This is a rather comprehensive Wikipedia style article describing the overlap between autism and ME/CFS https://neurodivergentinsights.com/blog/autism-and-health-issues?format=amp Generally I spend most of my days horizontal, lots of naps and a brain on idle. I'm on a trip from...

I'd add the cytokine therapies to the list. It seems more like playing downstream whack-a-mole. In general, anything that reduces inflammation probably has a good effect though often those effects likely don't last. My analogy is coming home and finding your house has been trashed with a...

My analogy is being marooned on a deserted island with a slow starvation level of food. Seeing a ship in distance can be enough to raise you energy levels for days. The next ship has a lesser effect. Even after a long hiatus, seeing a ship doesn't work as well as it did the first time. If...

I've been going to the same infectious disease doc for the past 15 years, 4 visits a year. He has been really good when I suggest things to try but I've pretty much always driven things. I realized this week that he has never done anything other than the standard "sit in the chairs and wait"...

Twenty years ago, before talk of PEM and cerebral perfusion I was teaching comp sci classes I'd have a pot of coffee, ride my bike to school and have another large cup of coffee before classes. At lunch I'd have another large coffee and lie down on the floor of my office for an hour. After...

Doctors don't even listen to other doctors I once drove my partner to the ER in Calgary because he was having stomach pains. I told him it was probably appendicitis. The ER doc admitted him overnight. I'm guessing he didn't meet all the criteria for appendicitis. His appendix burst. They...

The combination of autism and ME/CFS is interesting. The autistic desire for routine means that I can constantly override the exhaustion and PEM. Another characteristic of adults with autism is "masking". We can work very hard to hide our traits and blend in. Many gay men realize that being in...

Late last year I thought I was having consistent gall bladder attacks. When I got really bad I wrote a note to my partner of 30 years telling him I'd be back in a few days. I went downstairs to a friend's vacation condo and laid down on the couch for two days, not eating and barely drinking, to...

Hospital waiting rooms all across Canada are generally overwhelmed. They are largely "shut up and wait your turn". I have a type 4 reaction to bee stings. No anaphylaxis but gradual swelling for days. Got a sting on my face which seemed to be of more concern. Even though there is potential for...

I had to go on disability ten years ago. There were lots of signs of problems but I had quite a few coping strategies. At the time there wasn't much good information so many strategies were just figuring out what worked. In the computer lab, often two or three hours long, I'd pull up a chair to...

I'm fairly active, a half hour brisk walk every day and about an hour total each day. Fast walking is ok but shopping walking or standing is a problem pretty quickly. My current limit for any activity or outing is about 2 hours. After that I go downhill rapidly. When when I was teaching 15...

As I got older I started to have muscle soreness. I would tell friends I worked have to look back two days to see what I'd been doing. PEM for me is much the same. For a long time I didn't associate PEM with a mental/physical activity from several days ago. Now I moderate the effects. If I...

When I stand for several minutes I feel the urge to lie down. Even sitting is a problem. My mind is active lying down but turns almost off when vertical. For cerebral perfusion drugs there is also Viagra. One of the side effects is headaches, possibly from cerebral vasodilation. Ritanovir is...

Three of my last four renin tests have been well above the maximum. Aldosterone has been normal. My blood pressure is being controlled with telmisartan. One of the common causes seems to be stenosis of a kidney blood vessel. The kidney specialist is profoundly uninterested. I'm always amazed...

I've had high blood pressure since I was in my early 20s, now 65. When I look at symptoms, it is clear to me that my ME/CFS started slowly in my late teens. As child my family referred to me as "disgustingly healthy". In university I complained that I couldn't concentrate and could barely stay...