It will take less than 5 minutes.Make sure you don’t miss another  one by registering for our freeI am so happy for Jen Brea and I hope that she extracts every ounce of joy out of her newfound health and second chance at life. Now, for the first time in eight years, I can feel the I do still have mast cell activation syndrome for which I take Ketotifen, but even that seems like it is improving and may eventually go away.

Sadly, no matter the current confusion out there, MECFS remains a diagnosis of exclusion. Just yesterday someone reported that getting treated for pyroluria – a condition many doctors don’t know about or believe in – made a huge difference.I was recently diagnosed with Pyroluria. So sorry to hear that Deb.

Even though its a spinal condition you don’t need to have either I don’t believe.Cort, there is a profile of symptoms that our surgeon requires in addition to radiographic confirmation for CCI and tethered cord.This was a friend of mine and it was horrible for her. However, and I state again, she was not an HEDS patient.From someone on the Cusack protocol FB group: Hypermobility disorder is diagnosed when the symptoms are primarily joint related.

After 10 years of search for advice I eventually managed to get a scan, and it showed I had a very severe case with heart and liver compression. That road is what took me to being trained as an Ayurvedic Naturopath, medical doctor, and researcher. That expels some of the fluid from the tail into the brain part of the bag. If I feel like having chocolate, I’ll walk two blocks to the grocery store and get it.

Our neck symptoms only began after our respective surgeries.

At one point as I remember she reported that she could do a lot of mental activity but hardly any physical activity.

How about tho an enteroviral attack that weakened those ligaments?

Instead, I became far more ill than I could have imagined. Maybe not probable but at least possible. I was an acute, post-viral onset patient. It’s one of those you don’t want to miss this diagnosis that is “drilled” into our specialty training.

Because of my back surgery, it can still be difficult for me to sit in a chair for too long (standing is easier). We do not know what exactly causes it nor what sustains it.

So sorry to hear that Deb. He didn’t recognize me. I asked him to write a case study documenting my before and after (dramatically declined) cardiopulmonary test results. It requires a keen eye, and the ability to think “outside the box“. Could Jen and Jeff – and the 20 people on Phoenix Rising – who have tested positive for CCI/AAI be the ME/CFS wing of CCI/AAI?It could be argued there has been insufficient research to build on Ramsey and Dowsett’s hypothesis of ME being atypical polymyelitis.Jane Colby of UK ME children’s charity, Tymes Trust tweeted just the other day the UK MRC some years ago dismissed her proposal to build on Dr Betty Dowsett’s work (Bryon Hyde’s too) and that the infecting viruses in ME could be identified, given the will There was no will and they didn’t want to know.Colby said enteroviruses can be cultured from stools at beginning of infection as was done in polio. There are phenomena that science hasn't yet properly investigated (often due to lack of funding or interest, or sometimes just the limits of measurement). Now that I have the PT help I need, I think it’s mainly because of the deconditioning. One liter of saline x5 week dripped slowly at night took away flu like symptoms.Sorry, Issie, not Issue. I benefit enormously from neck traction-like interventions like the neck hammock. I have some reservations about her claims about CCI, though, especially the idea that it's so prevalent and that people are regularly going into remission once it's addressed. NZ is third world by comparison and I am so tired, not just from the illness, but from the complete absence of any support, medical or otherwise.Not even Mestinon, an old and safe drug which Jen, by the way, found that helped her.
Lots of bracing and proper alignment with body posture very necessary. And, again, this would also fit in with the prevalence of ME in the EDS population. To his surprise he met the criteria. I’m sure that one day we will all have access to great medical care and the work of yourself and people like Jen sure does go a very long way to this end. It was horrible few weeks but I got diagnosed, did some PT for my neck, and now I am fine.Even during that time, I was not bedridden. She recently did an hour of water aerobics. Thank you, thank you, thank you.I am in the same place as debs. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return.