CFS is a metabolic condition!

[jann1033]

Everything is always"normal range". I haven't had an ebv titer for years, according to ssi, it was" elevated but not enough" thefirst time i filed for disabilty, then the second time "showed i used to have it but donthave it anymore"( same time frame they said it wasnt high enough originally,lol) . masters .of miscommunication.

I tried to get my old records but they only have to keep them on site for a few years then ship them to Iron Mountain storage where basically they just disappear. So i only have about 5 out of 27 years, none of which were by any dr who knew anything about ME/CFS. MY next appointment isn't for a few months so since she ruled out (again) all the other possible misdiagnosis (i was really hoping for one, drats) im going to hit her up for more specfic findings for CFS . i think i have a paper that has them..

That reminds me, a little ot, but does anyone recall if anti inflammatories skew those results? I was thinking some were like slightly abnormal sed rates which im wondering if due to my NSAID if that would change them

Lordy my typing mistakes are only exceeded by my spelling. Trying to correct but if i miss some sorry

 

[Aidan Walsh]

no not herx I said earlier I picked up a bad cold started in my ears with water to my throat chest severe cold or touch of pneumonia not herx I am back on it was only off about a day or so

There is a bad virus going around Southampton plus I was at hospital where outbreak occured could have picked that up they call it winter virus something made me sick just found out today about the schools are closed as well I would think when I went for blood draw T3 at Southampton General may have got this it would explain worse cold low fevers coldness chills etc ear infections

 

[Aidan Walsh]

So what were your test results @jann1033 if you don't mind me asking

Calcium blood normal mid ranges, vitamin D about 640 plus, parathormone in middle normal range all looks good no toxicities 'off' all dairy drink 3 to 4 litres or more water daily

 

[MeSci]

Calcium blood normal mid ranges, vitamin D about 640 plus, parathormone in middle normal range all looks good no toxicities 'off' all dairy drink 3 to 4 litres or more water daily

Drinking that much pure water poses a risk of electrolyte deficiency if you are prone to losing them in urine, as many of us are. It can over-dilute your body fluids.

 

[Aidan Walsh]

no problems with water at all my electrolites are perfect my test came back on T3 Thyroid normal ranges next DAO enzyme hopefully January blood test to rule in/out histamine intolerance negative already to mastocytosis neg igg lyme pos igm do not have lyme

 

[Little Bluestem]

Not everyone knows their HR thereshold or has a doctor who can monitor them.

I think you can get your HR threshold (anaerobic threshold/lactic acid threshold) tested without a dr. order at an exercise or physical therapy place. [I will soon find out.] Once you know the threshold, you can use a heart-rate monitor to monitor yourself. There are threads with more details here.

Dr. Klimas says, "if you don't exercise you will only get worse", well that can be misinterpreted by some as saying you have to "try". dunno. If you can't even move then you can't move, I've been there I wouldn't have tried any type of walking, even if I knew my HR threshold! I feel by doing nothing (which is what I did) helped me improve over the initial yrs of illness. I was adivised by an ME specialist to not even "try" any type of "exercise". So I'm thinking this protocol of Dr. Klimas doesn't apply to everyone.

When you can't move, you usually cannot get to a CFS specialist such as Dr. Klimas. I will guess that she has never seen a severe ME patient and that her protocol does not apply to them. I will further guess that if you had known your HR threshold when you were severe, you would have found that you could not walk without exceeding it.

 

[Aidan Walsh]

I do not listen nor will I ever listen to Dr. Klimas no matter what she says plus she including Peterson were involved in radiation studies in Austrailia on 'internal ionization radiation injuries' funny now how she no longer talks about their findings to me she is more interested in getting her name on patents I continue to follow Gail Kanky's team on radiation

sickness broken chromosones/translocations in CFIDS worse than the Gulf War Vets who were already studied at Wayne State University on the Discovery Channel called 'Conspiracy Blood Test' by Dr. Heng's team plus it was Gail's team who funded the CFIDS patients & it is her team also that is funding the top genetisist in Dublin Ireland now her

team is funding also the no.1 woman in the World on radiation sickness & this Nuclear Radiologist is 100% convinced that CFIDS/Fibro is 100% radiation injuries so no I do not put no faith in Klimas at all never have never will & there is another one I refuse to follow & that's 'patient with CFIDS' Dr. David Bell another one who has done nothing but hide

behind patients & traffic useless books, if anyone thinks that the probability of radiation sickness is not involved then why is Bell in upstate New York working side by side with the no.1 radiation expert from Chernobyl inluding a former Scientist/Pentagon Officer who use to work as part of the Wayne State University until he got dumped & threatened

by the Pentagon not to talk about radiation sickness 'ever' he fled to Canada & crosses the border to be part of the Bell team another one is Peterson another one interested in patents none of these Doctors qualify to work on radiation except the Chernobyl Scientist...This is not Lyme whatsoever it is something worse than any virus/bacteria

/fungus could vitamin D3 do something against radiation sickness one thing is certain the Chernobyl victims have 100% identical symptoms to CFIDS patients there is no difference 'all' Gail's cohorts including yes some Doctors are radiation positives not a percentage 'all of them' so I have no faith in Klimas at all if she came out & told the truth

she would immediately loose any/all CDC funding they would shut her down tomorrow she has had over a quarter of a century to do something the fact is 'she is not qualified' & that's a fact time for her to move on let the experts in radiation take over to uncover the truth what this illness really is & why people are sick does anyone recall also 3

Mile Island cover up or the Manhatten Project or the Nuclear bombs thousands of them tested all across the globe??? 'No,' I do not want to hear nothing about Klimas 'ever' do not trust Government Scientists I recall Tom Hennessy going to Klimas I said Tom what did she do for

you he said absolutely nothing except a $600 bill I asked him is that all he said she is useless I would pray these so called Clinicians go far far away 'let the true Scientists take over' they are not qualified to work on radiation R.I.P Tom Hennessy u r missed by all you always spoke out the truth to all the lies & deceits...

 

[Aidan Walsh]

Please support the National CFIDS Foundation 100% of your donations goes directly into research they do not use any of your monies aside from funding crucial research so please even if it is $2.00 please send them anything at all if you have something old collecting dust or maybe clothes you no longer well try to sell it & send Gail's team some funds if

you owe the Government taxes send it to Gail as a write off & please all of you to show any kind of gratitude please send a small note of thanks to Dr. Coimbra or if you can send him something to help his vital research on vitamin D3 I think Gail knows me well I will only completely believe in radiation once I see work published peer reviewed but I

continue to support 100% Dr. Coimbra's research protocol...Herpes viruses is another controversial topic seems they all say its that yet everyone relapses sick after when I hear someone running 20 miles days leading normal lives I then

become a believer 'follow the wellness patients' question what they can do do not listen to someone say Oh! I am well I can walk up stairs

 

[Little Bluestem]

I cannot watch videos on my dial-up connection, but I get the impression from the conversation here that they are about getting people with ME to exercise more. Yet IIRC, most people here are using the heart rate monitor to slow down and limit their activity, because they had been going over their anaerobic threshold before. The idea that many of us are suffering from deconditioning seems pretty unlikely.

 

[Aidan Walsh]

Proven already in 1995 John Hopkins University electrophysiologycardiology that bradychardia syncope autonomic dysfunction plays a crucial role in illness just standing on a table at 45 degrees my blood pressure dropped to 80/30 so I don/t need any Doctors telling me excercise is good plus in November a paper just published on blocked veins in

chronic fatigue syndrome plus increased fluids in spinal chord I had a lumbar pucture also University of Miami my pressure was over 500 it shot across the room then it was 370 so if you want to go and stroke out listen to Klimas b.s. madness everyone must pace each day do what you can do not excercise your heart will explode it's happened to

numerous people I am now at my body weight maximum of 80,000 vitamin D3 I am off all sugar even in breads etc etc eat tons of fruits vegs nuts, Brazil Neurologist Dr. Coimbra uses as much as 130,000 D3 daily depending on your weight symptoms I drink 3 to 4 litres water daily I

noticed as soon as I eat sugar my tongue turns white wake up with horrible taste in my mouth which is a toxin/dehydrant for life off all meats, chicken, fish, lamb now only natural foods done with even gluten pure b.s. threw it all in the garbage only time I turn on my stove is if I want to

steam boil vegetables I eat bananas like crazy everyday I eat by spoon organic 100% peanut butter all my vitamins/minerals natural no gluten additives sugars natural only soon
I switch my Fish omega oils to a natural omega oil non fish I am done with eating poisonous

foods entirely I will try soon to put up success stories one is a young girl diagnosed with so called lyme disease she had a blocked Jugularvein fixed fully recovered 100% I tried Ketogenic

high fats diets did nothing at all if I decide to have bread or cakes it will be made only from coconut flours coconut oils I am off junk foods 100% I have absolutely no worries about toxicities to D3 as long as I drink water & avoid dairy calcium garbage cow's milk was made for

one thing only to make a calf stand up when it is born milk has been linked to osteo for decades plus loaded with vaccines plus remember when you see a nice chicken in the stores that is white they inject white flour into chickens to stay white otherwise they would turn brown avoid

gluten it is another toxic food read 'Grain Brain' put out by a neurologist they can have their gluten free trash not for this guy Happy New Year be well soon

 

[Mij]

@Aidan Walsh I had an RBC fatty acids test done years ago and fish oils are the ONLY oils that increased Omega 3 for me. Taking fish oils eliminated my cognitive issues. I still take them.

 

[unto]

I am sure that the cause of our illness, ME,
is a germ (probably a virus), for all patients + o- the same.
If there is a metabolic problem is almost certainly secondary.

 

[Aidan Walsh]

@Aidan Walsh I had an RBC fatty acids test done years ago and fish oils are the ONLY oils that increased Omega 3 for me. Taking fish oils eliminated my cognitive issues. I still take them.

thanks for info on omega fish oils I am hesitent to stay on but after your info will continue...

I am sure that the cause of our illness, ME,
is a germ (probably a virus), for all patients + o- the same.


If there is a metabolic problem is almost certainly secondary.

* I still believe in infection persisting theories but a century later nothing proven research now indicates Herpes type infections but until I hear someone screaming from rooftops Cured I will continue with D3 plus eating nutritious non toxic foods

 

[Aidan Walsh]

See 'Could a renegade Doctor save your life' all about Dr Skinner & low T3 thyroid issues this was in I think Daily Mail.co.uk he died not long ago but he fought hard for sick patients with NHS/Courts

 

[Aidan Walsh]

Also in the Telegraph u.k. newspaper see 'Painful proof that one thyroid does not fit all' this has also to do with T3 issues useless TSH tests T4's www.stopthethyroidmadness.com Even Facebook fights to keep this site off promoting Sythroid useless b.s.

 

[Aidan Walsh]

Recently published arcticle from Cambridge U.K. 24th. November 2014 titled 'What do lumbar puncture and jugular venoplasty say about a connection between chronic fatigue syndrome and idiopathic intracranial hypertension' Authors

Nicholas Higgins Radiologist, John P. Pickard, Andrew M. Lever Dept of Radiology Addenbrooke's Hospital Hills Road Cambridge CB2 OQQ U.K. www.ejmint.org/original-arcticle/1443000223 google...Arcticle number is not same???

1448000223 *27 patients since 2007 evaluated...Reductions of spinal fluids and/or angioplasty balloon inserted

 

[unto]

I do not believe that radiation could cause ME,
I look at my experience, after 30 years of disease (ME) I saw
many people (family members, relatives, friends, partners) to express my symptoms,
even after 15 or 20 years, there were people who for the first time
attended my house and after a few months had symptoms ....
I live in an urban periphery and there are radiation sources in it above average ....
I look especially to the history of ME, 1) often appeared in epidemic form
2) it is common to find more patients in the same environment (family, friends, work), 3) is often the beginning-like, 4) our immune system is constantly activated as if he were struggling against something that can not defeat , 5) the categories most affected are nurses, students, teachers, ie those who have to spend much time in the same space with people potentially ill ...
This behavior is typical of infectious diseases,
probably the cause is a virus not yet known that affects nerve cells and it lowers the threshold of sensitivity (light, noise, odors, ...) and toxicity (detergents, fumes / odors, paint, chemical ... ).
Aidan still do well to nourish healthy .....

 

[shah78]

Hello everybody,

As a physician and a patient of CFS for the last 3 years, I have an opportunity to view this from both sides. I made some interesting observations with my illness, and my training has helped me to look at it deeply.

My theory is that CFS is a metabolic condition- not infectious, immunologic, neurologic, muscular, gastrointestinal etc. There is a fundamental abnormality in energy production and distribution- and this is the defect present in ALL patients. Other symptoms, present in some and not others, are secondary to this. Here is an explanation of this theory, in a copy of the email I sent to Dr. Ron Davis, who heads the CFS research center at Stanford.

Hello Dr. Davis,

Thank you for starting the CFS research center at Stanford. As a 44-yr old family physician who has been suffering with this for 3 years, the last two of them homebound, I am aware of both sides of the coin.

I was excited to see that your center will be working on microarray analysis to look for gene expressions in the mitochondrial genomes as well. I had been wondering if such research was being done at all, and I'm thrilled to see that you will be. Two common themes here, lack of energy and maternal transmission, both point towards mitochondria, and I'm positive you will find the culprits here!

My theory is that CFS is a disease of metabolism- since during periods of good energy, all my other symptoms like brain fog, headache, muscle pains, tremors, constipation, chemical sensitivities, photo and phono phobia, depression, anxiety, all disappear. I feel completely normal! But when my energy levels are low, they all come back like drinking buddies (of fatigue).

There are clearly anomalies of energy production ( low energy is the common denominator in ALL patients, regardless of their other symptoms); and also energy distribution (like the occasional boosts in energy; and the delayed build up of energy after an activity).

My suggestion is if you could please look into mitochondrial gene expressions by microarrays during such episodes of low and 'normal' energy states, you will hit the motherload!

This is clearly a syndrome, and all other systems affected are secondary to this metabolic abnormality, and in my opinion, looking at other systems infectious, immunologic, neurologic, gastrointestinal, etc, will not be of substantial benefit.

Please know that I will be available to help in any way I can in the research of my disabling condition!

Thank you!

i'm a little late to the party, but I bring JackKruse.com's million word blog as my" house warming gift". He's been proving your point for almost four years now. I've been proving it to myself over the same time period. Try it, you'll like it! He'll take you to a place no academic-research grant based paradigm could ever hope to reach.

 

[Aidan Walsh]

I do not believe that radiation could cause ME,
I look at my experience, after 30 years of disease (ME) I saw
many people (family members, relatives, friends, partners) to express my symptoms,
even after 15 or 20 years, there were people who for the first time
attended my house and after a few months had symptoms ....
I live in an urban periphery and there are radiation sources in it above average ....
I look especially to the history of ME, 1) often appeared in epidemic form
2) it is common to find more patients in the same environment (family, friends, work), 3) is often the beginning-like, 4) our immune system is constantly activated as if he were struggling against something that can not defeat , 5) the categories most affected are nurses, students, teachers, ie those who have to spend much time in the same space with people potentially ill ...
This behavior is typical of infectious diseases,
probably the cause is a virus not yet known that affects nerve cells and it lowers the threshold of sensitivity (light, noise, odors, ...) and toxicity (detergents, fumes / odors, paint, chemical ... ).
Aidan still do well to nourish healthy .....

Sorry but I disagree with your thoughts that Radiation is not involved all patients tested thus far are positives to internal ionization radiation with broken cromosones/translocation worse than the Gulf War Vets that were first tested at Wayne State University by Dr. Heng that was featured on the Discovery Channel called 'conspiracy blood test' there are very few things that can cause breakage/translocation of cromosones & Radiation is one that does this plus the fact they test also positive to forms of radiation...Dan Peterson,Klimas, Bell know this is radiation yet they are holding back on telling any patients really why they are sick this also explains why these Governments are not funding they know radiation is very likely I know one thing for sure Gail Kanky's team also have numerous Doctors on their Medical board & they are all positives to radiation & are convinced 100% this is radiation sickness & they continue to go only down this research path only even this points back to the University of Hawaii were saying that the Ciguatera was not a normal type of infection that is why they called it an 'epitope' they knew that this fish infection had more than this which they were suggesting pointed to radiation isotopes & yes Radiation can cause epidemics & is very highly likely that radiation is a causative factor in illness...They have lied for decades these Governments the CDC/NIH/FDA including these so called clinicians who get their funds from CDC/NIH should not be trusted they are 'useless' unless the full truth is brought out with private funding everyone will remain sick one thing is clear I hope they are 100% wrong but I doubt that very much 'cause if they are right one cannot clear radiation from your body that is impossible to do I wish you well I pray they are wrong but it does explain numerous things about this horrible Monster they call 'fatigue' there are numerous videos on Chernobyl victims on youtube one is about the extreme fatigue see in the children the link to radiation is very strong yes there could be some Lyme patients undiagnosed but also one can have other untreated infections CFIDS is only given after all other illnesses are ruled out completely 'including radiation injuries'

 

[unto]

I think that veterans with Gulf War Syndrome before leaving were probably sick of mild ME, worsened for all the harsh physical and psychological received in war, that they ate food of excellent quality, with preservatives, they were forced to make vaccines , to take drugs, they were in contact with many harmful chemicals, explosives, used drugs, had strong emotions (fear, anxiety, anger), extreme cold and heat, etc., etc .; these factors would lead the majority of people with ME to manifest MCS and then GWS .....

breakage of chromosomes could be explained (perhaps) even with viral infections or
metabolism of viral products;