Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

Issie

Well-Known Member
How did they diagnose your Metabolic Syndrome? bloods or other tests? Can it be done Privately through a Lab?
I had a myriad of test at Mayo, AZ. My neurologist is known as "the POTS doctor". He said he feels that despite most of his patients not showing positive on mitochondria testing. He doesn't feel they are conclusive and testing for the right things----yet. He feels we all have mitro issues. I was DX with EDS and FMS by Rehumatologist, Chairi 0 with upright MRI, yet my drop has improved---not sure why. My methylation mutations using my 23&me data and a very knowledgeable friend and lots of research. Some good people out there on that. I really like Dr Ben Lynch take on the methylation mutations. He doesn't feel that just because we have the mutation is it presenting issues. Only if by epigenetic it has been activated or deactivated do we need supplements to correct it. Treating what has appeared to be causing issues has made a difference.

Issie
 

PamJ

Active Member
@PamJ
@Issie
Yes, scoliosis and the various forms of neural tube defects ( from spina bifida occulta to more serious forms) all have higher rates of Chiari. Neurosurgeon Michael Rosner ( a brilliant, wonderful person) discusses how Chiari malformations are complex and individuals demonstrate a number of different anomalies in the lower skull and upper neck which affect CSF flow and pressures.

It is interesting that we are the only mammals that have spina bifida/ spina bifida occulta. King Charles Spaniels sometimes get syringomyelia. The presence of EDS in the population is so interesting. Is this an evolutionary compensation for something??? An important, interesting book is The Downside of Upright Posture by Michael Flanagan, DC, neurological trained chiropractor. He is an expert on this structure / function issue.

So much to this. But, I have been reading about vagus nerve dysfunction. Think this is very relevant. The vagus nerve runs right by the atlas, and can be impacted by instability/ dislocation in this area. Diana Driscoll had discussed how a nicotine patch helped her have a bowel movement after 11 days. Geez, I shut down for 6 weeks at one point. Nothing helped.

But apparently the vagus nerve also affects/ communicates metabolic issues. Trying to stay on topic here.
Very interesting. I'm going to look for The Downside Of Upright Posture.
I have so many of these health issues. Grew up with allergies & asthma. That cleared up for many years. Then had bad sinusitis. 20 yrs ago, got CFS, Fibro, & Depression. And 15 yrs ago, found out I had Chiari 1, 9mm below the foramen magnum. Had decompression surgery in 2000 - Dr. cut out a piece of skull to allow my brainstem room. I had no improvement from the surgery. Then diagnosed with OI and POTS.
I wish I knew how this all fits together.
 

Issie

Well-Known Member
Very interesting. I'm going to look for The Downside Of Upright Posture.
I have so many of these health issues. Grew up with allergies & asthma. That cleared up for many years. Then had bad sinusitis. 20 yrs ago, got CFS, Fibro, & Depression. And 15 yrs ago, found out I had Chiari 1, 9mm below the foramen magnum. Had decompression surgery in 2000 - Dr. cut out a piece of skull to allow my brainstem room. I had no improvement from the surgery. Then diagnosed with OI and POTS.
I wish I knew how this all fits together.
Lots of people with Chiari have POTS. I thought the surgery for it is to get the cerebellum back up into the skull and off the brainstem and up out of the V cavity it falls into. Looks like what you had done would make it drop further. Also, so many of us have EDS to and instability of our spine. Alot of the time, fusions are done to stablize the spine.

Issie
 

Aidan Walsh

Well-Known Member
I had a myriad of test at Mayo, AZ. My neurologist is known as "the POTS doctor". He said he feels that despite most of his patients not showing positive on mitochondria testing. He doesn't feel they are conclusive and testing for the right things----yet. He feels we all have mitro issues. I was DX with EDS and FMS by Rehumatologist, Chairi 0 with upright MRI, yet my drop has improved---not sure why. My methylation mutations using my 23&me data and a very knowledgeable friend and lots of research. Some good people out there on that. I really like Dr Ben Lynch take on the methylation mutations. He doesn't feel that just because we have the mutation is it presenting issues. Only if by epigenetic it has been activated or deactivated do we need supplements to correct it. Treating what has appeared to be causing issues has made a difference.

Issie
I think you should ask your Neurologist to send your bloods to a metabolic genetic Doctor. I am sure you have hereditary fructose intolerance if you do your life may change for the better I would not take any therapies until you are tested either rule it in/out I am now off all forms of sucrose fructose I rarely eat Vegetables now either which are also loaded with fructose. Wheat they can have their wheat loaded with fructan...If food is in a Coffin box I refused to buy it fresh only
 

h3ro

Active Member
Where can we find the details of Hanson's research showing correlations between genes and gut symptoms and chemical sensitivity? These are both huge problems for me especially the chemical sensitivity.
 
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h3ro

Active Member
I've been suspecting for a while the low mitochondrial function is failing to keep TRPV1 channels stabilised and this is resulting in chemical sensitivity. It becomes fairly obvious in my experience my symptoms of TRPV1 activation and chemical sensitivity escalate rapidly when my energy levels tank.
 

Issie

Well-Known Member
I think you should ask your Neurologist to send your bloods to a metabolic genetic Doctor. I am sure you have hereditary fructose intolerance if you do your life may change for the better I would not take any therapies until you are tested either rule it in/out I am now off all forms of sucrose fructose I rarely eat Vegetables now either which are also loaded with fructose. Wheat they can have their wheat loaded with fructan...If food is in a Coffin box I refused to buy it fresh only
It's my sister that has fructose intolerance. Her doc is Dr Bateman. Not sure what test they did for her. She has had just about everything possible. And she is in all the CFS research projects. I'll pass your message on to her though.

I'm trying to be grain free. And I have to be vegan. I have Chronic Kidney Disease issues. Thank goodness veggies and low glycemic fruits don't seem to bother me.

Issie
 

Issie

Well-Known Member
Where can we find the details of Hanson's researching showing correlations between genes and gut symptoms and chemical sensitivity? These are both huge problems for me especially the chemical sensitivity.
Take a look into MCAS (mast cell activation syndrome ). Many of us have this along with our other issues.

Issie
 

Aidan Walsh

Well-Known Member
Where can we find the details of Hanson's researching showing correlations between genes and gut symptoms and chemical sensitivity? These are both huge problems for me especially the chemical sensitivity.
Not sure where that is at all
 

PamJ

Active Member
Lots of people with Chiari have POTS. I thought the surgery for it is to get the cerebellum back up into the skull and off the brainstem and up out of the V cavity it falls into. Looks like what you had done would make it drop further. Also, so many of us have EDS to and instability of our spine. Alot of the time, fusions are done to stablize the spine.

Issie
Sorry Issie, I said it wrong. The doctor removed a piece of skull to give the CEREBELLUM room. In a Chiari decompression surgery, they remove a piece of skull (and sometime a piece of the first vertera) the cerebellum has room to move back up into the skull. Interesting that my neurosurgeon said that my cerebellum looked "grey", and my dura matter was very thin, and he had to restitch it several times as it kept tearing :(

I do not have EDS. I'm sorry that you have to deal with this additional issue.
 

Aidan Walsh

Well-Known Member
Sorry Issie, I said it wrong. The doctor removed a piece of skull to give the CEREBELLUM room. In a Chiari decompression surgery, they remove a piece of skull (and sometime a piece of the first vertera) the cerebellum has room to move back up into the skull. Interesting that my neurosurgeon said that my cerebellum looked "grey", and my dura matter was very thin, and he had to restitch it several times as it kept tearing :(

I do not have EDS. I'm sorry that you have to deal with this additional issue.
I have seen countless People also told they do not have EDS & end up having it all along plus countless with EDS3 also have a 'crossover' Vascular type as well VEDS & also Chiari sits on the EDS chair of countless complications...I am more worried about the hereditary fructose intolerance (HFI) & what not to eat plus I have no doubts I do have a Chiari I do not need some incompetent Radiologist to be unable to read a proper MRI I was told in the past I had an normal MRI in Montreal I took the same MRI to University of Miami Neurology I was told then that the MRI was abnormal my opening pressure was over 500 shot across the room he knew as soon as he saw my MRI that I needed an Emergency LP done he saved my life...EDS diagnosis is missed a lot so if someone did say you do not have EDS I myself would keep an open mind I have seen countless the opposite plus numerous told they have only EDS3 & turn out they end up having 'crossover' with Vascular EDS as well 'VEDS' some can even have 'partial incomplete' Marfans Syndrome...For anyone to say that CFS Fibro Gwi EDS so called Lymies is all in ones head or depression they should be taken out & hanged from a tree in Public they are dangerous Doctors & if anyone thinks they can correct this with fraud CBT they also should be hung as well...
 

Aidan Walsh

Well-Known Member
It's my sister that has fructose intolerance. Her doc is Dr Bateman. Not sure what test they did for her. She has had just about everything possible. And she is in all the CFS research projects. I'll pass your message on to her though.

I'm trying to be grain free. And I have to be vegan. I have Chronic Kidney Disease issues. Thank goodness veggies and low glycemic fruits don't seem to bother me.

Issie
You can still be tolerant to have (HFI) & I would doubt Batemen would diagnose this they most likely say malabsorption or another label IBS. (HFI) is very dangerous if left untreated it can lead to Death Hypoglycemic shock & also Cancer Liver kidney failure...Grain Wheat is high in fructan it should be avoided plus all these Brain issues 'swelling' chiari etc etc could be reactions to these foods medicines (HFI). Kidney disease goes with (HFI). If your Sister was tested I am sure she would have said it was a Genetic test...Boston University has a great Team & lab dedicated to (HFI) & yes it just me play a major role in Chiari as well plus other issues...
 

PamJ

Active Member
I have seen countless People also told they do not have EDS & end up having it all along plus countless with EDS3 also have a 'crossover' Vascular type as well VEDS & also Chiari sits on the EDS chair of countless complications...I am more worried about the hereditary fructose intolerance (HFI) & what not to eat plus I have no doubts I do have a Chiari I do not need some incompetent Radiologist to be unable to read a proper MRI I was told in the past I had an normal MRI in Montreal I took the same MRI to University of Miami Neurology I was told then that the MRI was abnormal my opening pressure was over 500 shot across the room he knew as soon as he saw my MRI that I needed an Emergency LP done he saved my life...EDS diagnosis is missed a lot so if someone did say you do not have EDS I myself would keep an open mind I have seen countless the opposite plus numerous told they have only EDS3 & turn out they end up having 'crossover' with Vascular EDS as well 'VEDS' some can even have 'partial incomplete' Marfans Syndrome...For anyone to say that CFS Fibro Gwi EDS so called Lymies is all in ones head or depression they should be taken out & hanged from a tree in Public they are dangerous Doctors & if anyone thinks they can correct this with fraud CBT they also should be hung as well...
Thanks for the info, Aidan. Question - can a person have EDS but not have joint hypermobility and skin issues? Do doctors now normally do genetic testing for EDS?
 

Aidan Walsh

Well-Known Member
A person can show stiffness & not showig EDS Hyper mobility lots of Doctors use this term but its EDS3...There is no test yet for EDS3 there are mutations found but not yet replicated or confirmed...There is a test for (HFI) gene test adolase B plus other strains also Liver biopsy can find adolase B...Beighton/Brighton Scale pick up EDS plus Marfans measurement as well to rule in/out Marfan plus there are other connective tissue disorders to be ruled in/out I am stiff EDS3...Quote Dr Rodney Grahame 95% of patients diagnosed CFS/ME Fibro have undiagnosed EDS...He does not believe in ME he knows its EDS its just another label stupid Name like all the others like chronic ebv, Iceland disease etc etc even Lymies is EDS no doubts same as GWI Gulf War Illness some have never ever been to the Gulf
 

PamJ

Active Member
A person can show stiffness & not showig EDS Hyper mobility lots of Doctors use this term but its EDS3...There is no test yet for EDS3 there are mutations found but not yet replicated or confirmed...There is a test for (HFI) gene test adolase B plus other strains also Liver biopsy can find adolase B...Beighton/Brighton Scale pick up EDS plus Marfans measurement as well to rule in/out Marfan plus there are other connective tissue disorders to be ruled in/out I am stiff EDS3...Quote Dr Rodney Grahame 95% of patients diagnosed CFS/ME Fibro have undiagnosed EDS...He does not believe in ME he knows its EDS its just another label stupid Name like all the others like chronic ebv, Iceland disease etc etc even Lymies is EDS no doubts same as GWI Gulf War Illness some have never ever been to the Gulf
Thanks again. I just want to make sure I understand this, because sometimes my brain doesn't work. So is EDS3 a recently uncovered form of Ehlers Danlos, or has it been recognised for a long time? Also, is adolase B often related to EDS3? Sorry if I'm being dim witted.
 

Merida

Well-Known Member
This EDS3 is interesting. I have virtually all the features of EDS people except the obvious hypermobility. This includes prolapse of internal organs - rectocele, enterocele, borderline cystocele. ( took 12 years to get those diagnoses) I have fatty, lumpy deposits all along the undersides of my arms, and on my shoulder,amnd elsewhere. Even tho I am not overweight. My Mom had these features too, plus the mild scoliosis.

So what kind of metabolic issue is causing these odd lumpy deposits? Who else has them?

@PamJ
What you have been through! And the Chiari surgery didn't help. OMG. I think Michael Flanagan's discussion may help you understand more about the structural complexity. The fact that upright posture still has not been 'worked out' very well from an evolutionary perspective, and that often the key circulatory routes for blood and CSF entering and leaving the brain have glitches that cause pressure in the lower brain and symptoms.

I am reading about vagus nerve dysfunction and appreciate that pressure on this nerve can cause immune and metabolic dysfunction. Diana Driscoll, also an EDS person, has important info on this.

Whew.
 

PamJ

Active Member
This EDS3 is interesting. I have virtually all the features of EDS people except the obvious hypermobility. This includes prolapse of internal organs - rectocele, enterocele, borderline cystocele. ( took 12 years to get those diagnoses) I have fatty, lumpy deposits all along the undersides of my arms, and on my shoulder,amnd elsewhere. Even tho I am not overweight. My Mom had these features too, plus the mild scoliosis.

So what kind of metabolic issue is causing these odd lumpy deposits? Who else has them?

@PamJ
What you have been through! And the Chiari surgery didn't help. OMG. I think Michael Flanagan's discussion may help you understand more about the structural complexity. The fact that upright posture still has not been 'worked out' very well from an evolutionary perspective, and that often the key circulatory routes for blood and CSF entering and leaving the brain have glitches that cause pressure in the lower brain and symptoms.

I am reading about vagus nerve dysfunction and appreciate that pressure on this nerve can cause immune and metabolic dysfunction. Diana Driscoll, also an EDS person, has important info on this.

Whew.
Thank you Merida! I will look up Michael Flanagan and Diana Driscoll.
I had a spinal tap done after the surgery, results were normal. But I don't know if a spinal tap would show pressure in the lower brain. Also, I wonder how doctors determine if there is pressure on the vagus nerve.
 

Merida

Well-Known Member
@PamJ If you go to Michael Flanagan's site and blog on line, you can ask questions. Remembering from the Chiari conferences I went to, about 50% of surgical patients have significant improvement . So, always a challenge to figure out who should have it. I am a member of the Chiari and Syringomyelia Foundation ( CSF)- good group.

Cort has good info on vagus nerve!
 

Aidan Walsh

Well-Known Member
Thanks again. I just want to make sure I understand this, because sometimes my brain doesn't work. So is EDS3 a recently uncovered form of Ehlers Danlos, or has it been recognised for a long time? Also, is adolase B often related to EDS3? Sorry if I'm being dim witted.
EDS 3 is the most common form of Ehlers Danlos Syndrome some Doctors use terminology EDS 3 or Hyper Mobility type 3 & adolase B I still do not know what % in EDS types but most Doctors are also asleep on this as well not knowing its linked but it is but I still do not know how many would have its crucial to rule in/out these foods medicines procedures can kill. If u r Positive Medic Alert bracelet always wrist/neck plus RED FLAGS in all Medical files a must...If someone has (HFI) infusions meds foods can kill pushing ones Sucrose down...
 

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