Parkinson cause could show new gut connection.

Aidan Walsh

Well-Known Member
@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.
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

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
 

Aidan Walsh

Well-Known Member
@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.
Ron Davis's Team are now already looking at GSD so we should know more soon, also a Team from Alabama University just set up a lab to further their GSD findings so we will know soon they also said 3 things could be in

patients they have either 1. GSD, 2. Iron issues, found not in blood but in cells, 3. Matabolism issues. Even Ian Lipkin said issues in the cells Iron?
 

Aidan Walsh

Well-Known Member
Hope you can see the asymmetry I mentioned, and check the impact of a sacrum that is unstable. Note that the jaw is also involved. The pictures are exaggerations of the asymmetries for demonstration purposes. I first saw this and thought it was ridiculous - 15 years ago. But, yep, that’s me.
Those above all fall under EDS traits, I think the problem today is what is ME/CFS Fibro & so called Lyme, are they just different labels for EDS types & what is EDS is it GSD HATS Eagle Syndrome? It would be 100% impossible to have so

many people with the same symptoms having 15 different Named illness & it also means Funding for illness is actually higher because Funding all of these are seperated into Label categories & everyone is looking at different parts of the

Puzzle now...We need the full PUZZLE...Why not call it Puzzle Illness? Look at all the Lyme movements the bottom line is they do not get well, why is that? They all got ME/CFS EDS ES CCI? GSD HATS & they even call themselves

Chronic Lymies...These are LABELS
 

Issie

Well-Known Member
Yep, labels. And I do have EDS, but haven't had genetic. Testing as they assured me it wasn't vascular type. So not sure if there is genetic type or hEDS. I fit the new diagnostic in symptoms for hEDS or classic. Also in my family.

I'm a carrier for hemochromatosis on only one leg. But no signs of that being an issue.

I have a meningioma too. Not knowing how that plays in. Also smaller lower jaw and shorter neck.

But, as for possible things......I genetically am predisposed to not throwing off toxins and biotoxins. Have/had Lyme and coinfection and CIRS. Also protozoa/fungus that Dr. Fry Found in my blood and thyroid biopsy. Known to cause biofilm and tumors. Has been found in heart bypass plaque, brain tumors, prostate cancer and my thyroid. They know this biofilm can clog veins and cause issues with blood delivery. I wrote about it alot before he figured out it was a fungus and he thought it was a protozoa, on the DINET site. The biofilm attaches to vein walls and narrows and causes issues with dilation.
 

Issie

Well-Known Member
Ha! I always call it putting my puzzle pieces together. I'm up to a very large puzzle now. I have alot of the pieces in place, but not the full picture.
 

Aidan Walsh

Well-Known Member
Which docs in Alabama Adian? I live here now. Maybe I can get in touch with them.
The Team was mentioned in one of Cort Johnson's Health Rising about GSD , the last I heard they were off to the University of Alabama so maybe call the Genetics there to enquire & see if the will accept your blood for GSD I heard we

should know more by the end on the summer...I know they start off first taking a long History from you so I imagine it is face to face...You can ask your Doctor to have you checked for GSD they do certain bloods or skin biopsies as well

prior to Genetic panels...Maybe a Lab can do your GSD panel privately
 

Aidan Walsh

Well-Known Member
Ha! I always call it putting my puzzle pieces together. I'm up to a very large puzzle now. I have alot of the pieces in place, but not the full picture.
Its frustrating Issie, even the blog on Cort I got pissed off thinking finally a treatment on the metal issues, he is not recovered I wish people would not use these terms the same on Antibiotics saying recovered...Recovered my Ass
 

Issie

Well-Known Member
Yeah, no one living human on earth has perfect health. We just have more than our share of imperfections.

I don't know if I have that disease. I'm very tall, 6'. So grew quit fast and was nearly this tall at age 12. I did have low blood sugar issues when younger. But now it is pretty normal and sometimes just a very touch high around 107 fasting. I have perfect cholesterol and triglycerides. Found out the trick to that being good is low sugar and near no fruit.

So not thinking I'm in this category. Though I do have muscle issues. But I think we have that figured out too. I was in the study in Utah with my sis on mitrochondria and genetics in relationship to CFS. They found a rare gene with us that has been found in only one Amish family and leads to Spastic Ataxia. My dad and his dad seem to fit this picture. Though my sis tested that hers was also manifesting, she has no symptoms. But I have symptoms like my dad and his dad before him. (We are not Amish. But who knows where genetics get crossed and we are all one big human family here on earth.)
 

Aidan Walsh

Well-Known Member
Yeah, no one living human on earth has perfect health. We just have more than our share of imperfections.

I don't know if I have that disease. I'm very tall, 6'. So grew quit fast and was nearly this tall at age 12. I did have low blood sugar issues when younger. But now it is pretty normal and sometimes just a very touch high around 107 fasting. I have perfect cholesterol and triglycerides. Found out the trick to that being good is low sugar and near no fruit.

So not thinking I'm in this category. Though I do have muscle issues. But I think we have that figured out too. I was in the study in Utah with my sis on mitrochondria and genetics in relationship to CFS. They found a rare gene with us that has been found in only one Amish family and leads to Spastic Ataxia. My dad and his dad seem to fit this picture. Though my sis tested that hers was also manifesting, she has no symptoms. But I have symptoms like my dad and his dad before him. (We are not Amish. But who knows where genetics get crossed and we are all one big human family here on earth.)
There are numerous types of GSD & also Sugar does play roles, the liver type one cannot use more than 15 mg of sugar daily...2 of the 10 tested had a rare type 13 only thus far found in one or two families...Also you need to look

into Eagle Syndrome...Height, I am tall as well 5' 1 1/2 so height short or tall would not matter...Going be testing is what matters now 'results'
 

Aidan Walsh

Well-Known Member
Yep, labels. And I do have EDS, but haven't had genetic. Testing as they assured me it wasn't vascular type. So not sure if there is genetic type or hEDS. I fit the new diagnostic in symptoms for hEDS or classic. Also in my family.

I'm a carrier for hemochromatosis on only one leg. But no signs of that being an issue.

I have a meningioma too. Not knowing how that plays in. Also smaller lower jaw and shorter neck.

But, as for possible things......I genetically am predisposed to not throwing off toxins and biotoxins. Have/had Lyme and coinfection and CIRS. Also protozoa/fungus that Dr. Fry Found in my blood and thyroid biopsy. Known to cause biofilm and tumors. Has been found in heart bypass plaque, brain tumors, prostate cancer and my thyroid. They know this biofilm can clog veins and cause issues with blood delivery. I wrote about it alot before he figured out it was a fungus and he thought it was a protozoa, on the DINET site. The biofilm attaches to vein walls and narrows and causes issues with dilation.
I have not been tested for hemochromacosis but should have been my both Parents were Irish I asked the Genetic Doctor she said on NHS they do the blood test first not the Genetic one
 

Issie

Well-Known Member
Adian are you 6' or 5'? I guess I could look your profile up. I saw you when I googled you. How did you get to this place from having been so physical? And why in the world would you be a boxer with EDS? (Trying to understand people's life choices.)
 

Aidan Walsh

Well-Known Member
You can do 23&me and find out about hemochromatosis. I wonder if the genes could be looked up for the GSD too.
The GSD Panel on NHS done by Doctors in the UK I think is £900 but GSD No, not on other testing like 23&me it is a specific panel not even found on Genome testing I heard some Private labs in Europe run these & medichecks runs the iron overload test I think they also do the iron Genetic one as well...There are I think 3 types now on type

IX one Woman told me her daughter had a liver biopsy diagnose with GSD type I but was misdiagnosed she had GSD type IX found on Genetic testing...Some Doctors good at GSD can pick up a type there also are only a few types that have exercise intolerance maybe about 2 or 3 of them...I was also told prior I had EDS 3 & because I am

tall fit partial not full Marfans but recent Genetic Doctor said No, I do not have any Marfans or EDS 3 she said likely I fit more to HSD Hypermobility Spectrum Disorder instead...I believe I have Eagle Syndrome my Panoramic Dental x-ray shows calcified bones both sides the left is thicker & longer than right side & right in long & pointy I suspect I

have the Vascular compression type ES I likely need Surgery done soon...
 

Aidan Walsh

Well-Known Member
Adian are you 6' or 5'? I guess I could look your profile up. I saw you when I googled you. How did you get to this place from having been so physical? And why in the world would you be a boxer with EDS? (Trying to understand people's life choices.)

6' 1.5'' Tall, being hypermobile Healthy in any Sport has advantages over others there is a hypermobile Guy somewhere who Wins all his Karate fights I think he is a World Champion. I was extremely Healthy all muscle no fat

before I became Sick I was also in the best shape of my life I was also doing a Commercial Pilot's License in Aviation...Look at the Circus People who are Bendy they have no illness at all, numerous Athletes are competing with

this Genetic trait its not uncommon...That is why I no doubts believe there is something else going on besides being an EDS person. I never knew anything about EDS prior to becoming sick & I could never

understand majority of Athletes need to stretch prior to training I never had to do this...
 

Issie

Well-Known Member
Yeah, but being knocked in the head with EDS and being a bendy show person is way different. With the pains I have I can't imagine it. I imagine you having kept your body in such tight muscle condition has helped with avoiding dislocation.

What do you think changed and you got sick?
 

Issie

Well-Known Member
I'm old enough to be your mom and I can cross my legs, bend over with straight legs and put my hands flat on floor. We are super flexible, bendy....but Hun, because of this (meaning wear and tear, and pains) things get worse with age. Try to maintain your muscle mass if it at all possible.

Do you have signs of dysautonomia?
 

Aidan Walsh

Well-Known Member
Yeah, but being knocked in the head with EDS and being a bendy show person is way different. With the pains I have I can't imagine it. I imagine you having kept your body in such tight muscle condition has helped with avoiding dislocation.

What do you think changed and you got sick?
Not sue Why I guess some kind of Flu or infection tripped the illness off, I have Syncope told I do not have POTS but who knows, I have diastolic dysfunction also now Hypertrophy, do not know if I have dysautonomia...Vascular Eagle Syndrome can come with Syncope also Hypertrophy on a Heart ultrasound plus my ES bones are straight

down not under the Jaw like Classical types are & would explain the tachycardia autonomic issues more...I will know more once I have my Doctor run the proper CT Scan Brain with Contrast hopefully they can do 3D images to see 360 degrees of the Skull...I do dislocate especially at shoulder areas I also Pop quite a bit
 

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