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Examples of diseases in which secondary dysautonomia can occur include: Diabetes. Parkinson’s disease. Muscular sclerosis. Rheumatoid arthritis. Lupus. Sjogren's syndrome. Sarcoidosis. Crohn’s disease, ulcerative colitis. Celiac disease. Charcot-Marie-Tooth disease. Chiari malformation...

"The challenge is there are no evidence-based treatments for long-COVID or late COVID POTS (Postural Orthostatic Tachycardia Syndrome) because it's so new. There hasn't been time to do studies. But at the same time, from a patient point of view, it's not reasonable to say 'sit tight' or 'we'll...

This doesn't help either.

I bought a 3 inch latex topper 6 years ago and it is still very supportive.

@JemPD No, latex is nothing like memory foam. You don't 'sink in', it naturally holds it's firmness with just the right amount of support and regulates temperatures. I spent a bit of money on a memory foam pillow and gave it away, it was too hot and my head sunk in like cement. I bought...

I use a latex mattress topper that looks like this. They come in different thicknesses. I switched to a Mulberry silk duvet many years ago b/c of night sweats. I will never go back to wool or feathers.

The test panels were ordered by my functional/integrative doctor 20 years ago. He worked at a biomedical clinic at the time that offered these tests. I'm not sure if patients were able to order the test panel on their own but I just looked at their website and they are no longer offering...

@Chestnut tree My blood and urine tests were sent to a lab in Canada.

@DokaGirl My doctor attended a workshop in Arizona in 2002 where Hemex Lab was located and met David Berg. There were also a few other doctors that treated ME patients at that workshop. David Berg flat out told my doctor that I had HHV6 reactivation based on my test results. My tests...

It was a theory from 1999 that pwME and now pwLyme and MCAS (add on more) were/are in a hypercoagulative (thick blood) state where injecting heparin dissolves fibrin. So the theory goes that a hypercoagulable state starves cells of oxygen and nutrients.

This article is from 1999. I had the ISAC panel done and it was normal. I didn't have the genetic profile done b/c I didn't feel it applied to me. David Berg is not a medical person. He or his wife was the owner of Hemex Lab that did the tests.

It's not surprising, ME has been dismissed and described as 'mysterious' for decades. Just sweep it under the rug and look the other way. The shocked expressions of news reporters/journalists when interviewing LC patients and how they felt misunderstood and dismissed was interesting to watch.

How does the pain compare to 'ghost pain' from an amputation of a limb? They used to think that ghost pain was psychological, but later discovered that the 'pain' originates from the spinal cord/brain. Had a patient were I worked years ago who had his little toe amputated in a Russian...

Neurogenic Orthostatic Hypotension

I feel light headed from postural changes and my heart rate shoots up when I drink coffee in the morning. I don't feel faint, but have to get up slowly after lying down. I read this which leads me to believe that I don't have low BP or might also have something else: Caffeine is a widely...

I still haven't figured out why OI is worse in the morning for me. I'm quite fine starting around 6pm. Perhaps it's something else that is causing the need to lie down more during the earlier hours?

Same here, super fast.

I have no idea what they are referring to, but I do alternate nostril breathing yoga which helps calm my nervous system. It's quite effective for me when my brain and body are on 'overdrive', or when I have to got out somewhere and feeling nervous. I do the 'exercise' lying down.

My GP told me that women who have experienced hot flashes and other symptoms of menopause had a 50% lower risk of developing the most common forms of breast cancer compared with postmenopausal women who had never had such symptoms in a study. Abstract here I've been in menopause for almost 6...