Parkinson cause could show new gut connection.

Aidan Walsh

Well-Known Member
@Aidan Walsh Sorry for the the mis-spell of your name. Old brain syndrome here - can't remember proper names, and spelling is going to hell.
Anyway, both of the grandkids with tongue tie have delayed speech. My granddaughter, not so much, my grandson is quite delayed - age 3. He had the tongue tie surgery at under a year- his Mom and Dad are not certain it was the right decision. He understands everything, but pronunciation is very difficult. He also has a counterclockwise hair whorl on the right side of his head. Unusual. And my granddaughter has 2 hair whorls, one in the front above her forehead. Unusual. So, yes, there are a lot of glitchy structural differences that may or may not be important. But hair whorls are absolutely connected to brain development.

My son also had delayed speech, delayed reading, delayed lots of things. But about age 9-10 everything turned around. He graduated 2nd in large high school class with heavy science/math, and cum laude computer science, Univ. of California, Santa Barbara. He has a very successful internet business. Very smart guy. But also has some health issues, some depression, had ear problems, and eating problems, fatigue. He had a well documented case ( IgG/IgM) of EBV at age 5, 1986. Had multiple neurological symptoms following this - including severe urinary frequency, pain in fingers and toes, nighttime hunger, depression. He also has ( mild) scoliosis, as do I, as did my Mom. Also RhD neg.

So, Aidan, seems as if we are different somehow. I keep searching. Thank you for sharing. I will continue sharing, too. I may learn something new tomorrow. Sometimes we need to reach beyond the scientific method to the realms that few can really reach into. So . . . Blessings.
That is fine on the spelling it was just a correction thought that's all...The tongue tie has me thinking but will ask when I see the Doctors...I still feel Eagles Syndrome is involved, I know it also runs in Families I know one Woman

her & her child have this & it can block major Arteries & through the neck is best option each side. I know tongue tie can go with Eagle as well combined...I also have urine frequency issues & told also no scoliosis...Dr.Ron Davis

Stanford Genome Centre says IDO-2 70 tested Positive to this mutation none of the Controls were Positives he believes this is a major player now they are tying to find medicines to correct it now.Open Medicine Foundation on Facebook Dr. Ron Davis...
 

Merida

Well-Known Member
@Aidan Walsh Yes, I am not surprised that Eagle syndrome can be commonly associated with tongue tie. There seem to be a long list of glitchy structure issues, and finding the one ( or ones ) that are causing symptoms is quite a search. Here is my list, things discovered over a period of 20 years : small posterior fossa ( short clivus/ steep angle of tentorium - just like Chiari, but no tonsillar herniation - but causing abnormal CSF flow/pressures ), high arched palate, deviated septum, cervical ribs, mild scoliosis/rotation in thoracic area, hemangiomas in liver, T-8/T9 vertebrae, spina bifida occulta, long redundant tortuous colon, which is telescoping in the sigmoid area, very high attachment of colon on left side, hiatal hernia, small sacral foramina ( some small Tarlov cysts at S-2/S3), very odd feet - huge bunions, hammer toes, high arches, probable tethered spinal cord, multiple calcium phosphate deposits in abdomen.

Please keep us/me updated.
 

Aidan Walsh

Well-Known Member
@Aidan Walsh Yes, I am not surprised that Eagle syndrome can be commonly associated with tongue tie. There seem to be a long list of glitchy structure issues, and finding the one ( or ones ) that are causing symptoms is quite a search. Here is my list, things discovered over a period of 20 years : small posterior fossa ( short clivus/ steep angle of tentorium - just like Chiari, but no tonsillar herniation - but causing abnormal CSF flow/pressures ), high arched palate, deviated septum, cervical ribs, mild scoliosis/rotation in thoracic area, hemangiomas in liver, T-8/T9 vertebrae, spina bifida occulta, long redundant tortuous colon, which is telescoping in the sigmoid area, very high attachment of colon on left side, hiatal hernia, small sacral foramina ( some small Tarlov cysts at S-2/S3), very odd feet - huge bunions, hammer toes, high arches, probable tethered spinal cord, multiple calcium phosphate deposits in abdomen.

Please keep us/me updated.
I have ingrown toe nails only way for me to Combat them in both big toes I cut my nails short & my hand nails I do the same or I scratch myself while sleeping... I got ultrasound Heart back saying increased BP showing but my bp

always around 110/90 so I know I do not have high blood pressure but seems to spike up. I went few years back to do tread Mill walking with Cardiologist monitoring once they set me up they refused to let me walk on the treadmill it

was too risky. Prior to becoming Sick my blood pressure was always 120/80 & my core body temperature 98.6, it is now always lower like 96.5/97 I have not seen 98.6 since becoming ill. One x-ray standing drinking Barium showed my

Gut slow at going down whatever that meant...I did get a very bad Boxing abdominal blow weeks prior to becoming sick I was stopped but came back I felt something tore inside. I still to this day have this right sided pain its not Appendix that was removed as a teen...
 

Merida

Well-Known Member
@Aidan Walsh Thanks for sharing. Yes, immediately after my neck/ pelvis issue my body temp. dropped from always normal 98.6 to 96.5 to 97.5. Everyone says this is thyroid, but mine checks out normal.

Gee, abdominal blow. I had severe abdominal pain following the pelvis injury - and the development of a tight band of tissue on the right side. No one could find anything wrong initially. I suspect there was some tearing of connective tissue and a kink in my intestines. Lots of issues there. Finally consult with colorectal surgeon brought some answers - long, redundant tortuous, colon, very high unusual atttachment on the left side, telescoping of sigmoid/ rectal area ( had a solitary rectal ulcer - healed by acupuncture) The gastrointestinal doctors missed all of this. It took the surgeons ( again ) to figure things out. No surgery at this point, but if I would start vomiting and losing weight I would be right back to the surgeons. I hope this is helpful.❤
 

Aidan Walsh

Well-Known Member
@Aidan Walsh Thanks for sharing. Yes, immediately after my neck/ pelvis issue my body temp. dropped from always normal 98.6 to 96.5 to 97.5. Everyone says this is thyroid, but mine checks out normal.

Gee, abdominal blow. I had severe abdominal pain following the pelvis injury - and the development of a tight band of tissue on the right side. No one could find anything wrong initially. I suspect there was some tearing of connective tissue and a kink in my intestines. Lots of issues there. Finally consult with colorectal surgeon brought some answers - long, redundant tortuous, colon, very high unusual atttachment on the left side, telescoping of sigmoid/ rectal area ( had a solitary rectal ulcer - healed by acupuncture) The gastrointestinal doctors missed all of this. It took the surgeons ( again ) to figure things out. No surgery at this point, but if I would start vomiting and losing weight I would be right back to the surgeons. I hope this is helpful.❤

Thanks, one Woman told me today she was diagnosed with Parathyroid had surgery 2.5 of her 4 glands removed she now had Surgery for one side only Eagle Syndrome. Her urine 24 hour collection test Calcium was sky high
 
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Aidan Walsh

Well-Known Member
Also go on YouTube look up a condition in television series USA called Mystery Diagnosis for 'Habba Syndrome' named after this Doctor there are medicines with meals also a diagnostic protocol, it can happen also to people who have appendix or gal bladder removed
 

Merida

Well-Known Member
@Aidan Walsh I expect there are many obscure problems that go on to cause symptoms in people. But when people are having multiple hormonal, neurological, pain issues, the first place to look is what is happening at the craniocervical junction/lower brain and skull to affect spinal flow flow and drainage and blood flow to the brain. Such a difficult journey.
 

Aidan Walsh

Well-Known Member
@Aidan Walsh I expect there are many obscure problems that go on to cause symptoms in people. But when people are having multiple hormonal, neurological, pain issues, the first place to look is what is happening at the craniocervical junction/lower brain and skull to affect spinal flow flow and drainage and blood flow to the brain. Such a difficult journey.

Spontaneous Spinal Fluid Leaks as well, can always cause Hypo Hypertension issues. My left Nostril clear fluid constantly leaks & they do nothing. Could this also be Haba Syndrome? No-one is testing for this now
 

Merida

Well-Known Member
Spontaneous Spinal Fluid Leaks as well, can always cause Hypo Hypertension issues. My left Nostril clear fluid constantly leaks & they do nothing. Could this also be Haba Syndrome? No-one is testing for this now
Yes, I appreciate what you are saying. A dear friend could actually feel the dripping up behind her nose / upper pharynx. She was so sick, and even the neurosurgeons did not take her seriously. Terrible. But there are 2 neurosurgeons I know of who would listen and take charge : Daniel Heffez in Minnesota ( or Wisconsin ?) and Michael Rosner in North Carolina. Also, the former Chiari Institute neurosurgeons.

Have you read Jennifer Brea's blogs at Medium.com ? ( She was main character in Unrest) So important. Her symptoms started after a viral illness while she was a Ph.D. student at Harvard. She was not taken seriously, and was diagnosed as M.E./CFS. As part of the movie she showed her MRIs, all read as normal. Just by coincidence a vascular neurosurgeon saw the movie/MRIs and noticed she had a 'empty sella' - i.e. the pituitary gland was not sitting correctly in the sphenoid fossa. The neurosurgeon had seen this in Ehlers-DAnlos people and appreciated the potential importance. Connected her with the correct neurosurgical specialty. She had many tests, diagnosed with craniocervical instability and tethered cord, had several surgeries ( just last year) and is now no longer fits the criteria for ME/CFS. All of her symptoms are gone or improved.

So important. Hugs.
 

Aidan Walsh

Well-Known Member
Yes, I appreciate what you are saying. A dear friend could actually feel the dripping up behind her nose / upper pharynx. She was so sick, and even the neurosurgeons did not take her seriously. Terrible. But there are 2 neurosurgeons I know of who would listen and take charge : Daniel Heffez in Minnesota ( or Wisconsin ?) and Michael Rosner in North Carolina. Also, the former Chiari Institute neurosurgeons.

Have you read Jennifer Brea's blogs at Medium.com ? ( She was main character in Unrest) So important. Her symptoms started after a viral illness while she was a Ph.D. student at Harvard. She was not taken seriously, and was diagnosed as M.E./CFS. As part of the movie she showed her MRIs, all read as normal. Just by coincidence a vascular neurosurgeon saw the movie/MRIs and noticed she had a 'empty sella' - i.e. the pituitary gland was not sitting correctly in the sphenoid fossa. The neurosurgeon had seen this in Ehlers-DAnlos people and appreciated the potential importance. Connected her with the correct neurosurgical specialty. She had many tests, diagnosed with craniocervical instability and tethered cord, had several surgeries ( just last year) and is now no longer fits the criteria for ME/CFS. All of her symptoms are gone or improved.

So important. Hugs.
CCI never lasts, she may be well now but it will come back, I also see the same with Scoliosis, they go get Surgery then they get MALS stay away from these idiot Chiari Stenosis CCI Scoliosis Tethered Doctors they make major monies off these expensive Surgeries
 

Aidan Walsh

Well-Known Member
Also some become paralysed for life, my friend went for spinal fluid leak she became paralysed for 3 solid weeks Ron Davis now says IDO 2 has multiple mutations see in all 70 tested now, 100% of Controls were Negative, his test is 100% accurate now
 

Aidan Walsh

Well-Known Member
We all have IDO-1 & IDO-2 in our Brains IDO-2 is mutated in 100% tested by Ron Davis none of the Healthy Controls have this all were Negative
 
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Merida

Well-Known Member
@Aidan Walsh I think there are better ways to deal with craniocervical instability - not surgery. And scoliosis. Jerry Hesch, doctorate of phys. Therapy is an expert on the complex issues of neck/ pelvis/ spine alignment. in Colorado. Trying to get there.

Also, orthopedic surgeon , Odessa Univ., Prof. Dr. Valentyn Serdyuk , wrote a wonderful book - Scoliosis and Spinal Pain Syndrome. He outlines specific non surgical techniques for correction - beginning at an early age. Geez, but here in the U.S. doctors jump to those terrible extensive surgeries.

I will be very surprised if Ron Davis has the answer. He may have found one piece of the puzzle.
 

Merida

Well-Known Member
We all have IDO-1 & IDO-2 in our Brains IDO-2 is mutated in 100% tested by Ron Davis none of the Healthy Controls have this all were Negative
It is interesting that Borrelia can actually modulate the immune system. ( from email to researcher ) slows the IgM to IgG conversion. So, who knows what other organisms can do.
 

Aidan Walsh

Well-Known Member
It is interesting that Borrelia can actually modulate the immune system. ( from email to researcher ) slows the IgM to IgG conversion. So, who knows what other organisms can do.
I will never let anyone operate on me for Chiari expecially when this illness comes with Metal allergy issues & the screws loosen with chiari, we are also in a Hypermobile state so all this stuff on low blood pressure can be causing a chiari state

like dried up dehydrated prunes. Ron Davis said the last 3 years East African Sleeping Sickness what happened to all of that hype waste of time. They said they wanted urine blood hair samples so I email down there, now too many people

to get tested, fed up of chasing Tails with this F'n illness. I have seen scoliosis corrected in Surgery only to be made worse with other stomach issues like MALS
 
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Issie

Well-Known Member
I had a POTS friend who came from UK for surgery and the surgery did not go well. In fact, she went from bad to very, very bad. She has since passed away and she was a young beautiful girl who had her whole life in front of her. Very sad.

https://www.healthrising.org/forums/threads/how-bad-can-ehlors-danlos-syndrome-get-really-really-bad.2205/

I have since talked to her mother and heard how horrible it all was for her. She tried to put on a strong front and try to not complain. But it was horrible for her.
 

Aidan Walsh

Well-Known Member
Also, Angela Peterson on Facebook after only 15 days of Tagament she is 100% well...Its also an antacid & it is a H2 so I wonder if HATS or she says its working on 1986 paper ebv supposedly Cured
 

Aidan Walsh

Well-Known Member
I had a POTS friend who came from UK for surgery and the surgery did not go well. In fact, she went from bad to very, very bad. She has since passed away and she was a young beautiful girl who had her whole life in front of her. Very sad.
How did she Die? She ended it?
 

Issie

Well-Known Member
How did she Die? She ended it?
I added a note her mom wrote. Edited above.

I'm not sure if it was a choice or just progression of it all. She basically was like Ron Davis son in the end. Couldnt take light or noise.

When I talked to her last, she was choosing wrong words when she talked and it somehow affected that. I knew something was really wrong. But she didn't tell me herself. I found out after the fact and she was no longer.
 

Issie

Well-Known Member
Of recent Zantac has had some recalls. So I will be switching to Tagament if I need to go back on an H2. I was told with my mast cell, if you take an H2 you need an H1 too. As it will make that more down the line. Some are using H3 (Singular) and H1 (Allegra) that combination actually being used to improve cognitive functions.
 

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