So many things going on that need to be ruled in/out & all these come up but not sure what percent yet from EDS GSD Eagle Syndrome Stenosis CCI Tethered Spinal Chord Alpha Gal etc & also now HATS Hereditary Alpha Tryptasemia Syndrome but they say as much as 6% of the population has HATS so to me even if HATS is involved@Aidan Walsh and @Issie
Hope you two aren’t too exhausted to continue this. You both amaze me with your experiences and the depth of your thinking and exploration. Thank you for sharing.
Aiden, started long email, then got exhausted. Issie, I was on pure oxycodone for pain,nand I really think it was ( in addition to stopping pain) indirectly boosting dopamine - D2 receptor ? As I got energy too, and felt more normal. ( had spent 7 months with no pain meds - developed hyperalgesia/ allodynia - the opiates stopped this) Now I am switched to Norco - getting sick on it, and increased fatigue. Doesn’t matter to anyone but me. Oxycodone for chronic conditions is now forbidden by DEA.
Okay - so what is the common denominator here? What is it that we all share? I am beginning to think that it is, indeed, a connective tissue difference - which results in blood brain barrier differences ( due to differences in the dura meningeal structure) and inherent instability in the pelvis, spine, neck. Aiden, your spect scan showed issues in your left brain areas? My brain MRI actually shows a smaller, squeezed up space in the left lower brain - related to how the dura is positioned. Neuro surgeon measured small posterior fossa. A person with a normal sized posterior fossa might be okay with some twisting of the dura in the brain, but not me.
I learned from the osteopaths ( and sacro Occipital chiropractors) how the nervous system functions : there is a minute rhythm between the cranial bones ( especially occiput) and sacrum that pumps spinal fluid from the sacral bulb back to the brain against gravity. All the cranial bones have a specific minute motion that is critical to CNS function. The jaw is also involved ( just watch a few videos on You Tube by Dr. Brendan Stack. ) So people who have unbalanced, asymmetric sacrum/ pelvis, spine,etc. can have issues with pressures and circulation.
So much to this - will try to post a photo of the sAcro Occipital findings.
Now in my family and me there are lots of physical, structural differences: Spina bifida occulta,small holes in the sacrum( sacrum hypodevelopment), maxilla hypodevelopment ( teeth roots in sinuses),
Heart structural differences, possible kidney differences ( on my left side), one side of face slightly smaller ( not very noticeable), cervical ribs, suspect pelvis differences, long rendundant colon, torque in index and little fingers, huge bunions/ hammer toes, Scoliosis, more.
So what has caused all these things - could it be a glycogen storage disorder ? Or metabolic difference ? I call it the gift and the curse, as so many in the maternal have gifts. Will try to post photos I’d sacro Occipital brochure to show this asymmetry I mention.
in us it likely must be something else or because we likely have traits in EDS GSD then HATS could be making us Sick or the Eagle Syndrome...Something must be driving this illness, it would be impossible to have so many abnormalities to be all in ones head...If we have GSD then maybe some treatments may help us, Ron Davis needs to
look now at GSD as well confirmed ones, are they also in a Metabolic trap as well? Also is East African Sleeping Sickness in RNA the actual Cause? Suramin is one of the medicines to corrects the blood nano-needle found by Davis at Stanford so may be the Cause...When I think EDS there are countless who are not Sick they lead amazing
lives no illness at all, so what is driving EDS? I just read 2 posts one on Cort Johnson & one also on Histamine Intolerance both now found to have Benign tumors of the adrenal glands that require Surgeries, I know I have an Adenoma 4 mm of my Pituitary Gland but they say likely from Birth...I also wonder to this day, did Antibiotics Poison
us & are they hitting people with EDS GSD Traits? Metal Allergies also do these antibiotics contains metals? If we are in a metabolic trap Ron Davis says he can get us out of this if this is the case...Something must be in the blood even Alpha Gal can be driving all the illness but I have seen some test Negative to AG with ME/CFS. I still think Eagle
Syndrome must be playing a role especially if ones vascular vessels are Compresses, it could also explain numerous tests being low I think Ron Davis needs to measure not only CCI before/after Surgeries but also the same with Eagle Syndrome...There was one paper I read by a Scottish Doctor who said antibiotics cause her calcification in Eagle
Syndrome it was a letter to the Editor of the Published Paper 'The Eagle has landed' so yes too many people Sick from these antibiotics the same in Gulf War Illness Vets with Cipro...Some say the illness is Radiation Sickness I do not believe this at all & Ron Davis looked for this & did not find it