The Chronic Fatigue Element

[Dr. Diana]

Hi Diana
Yes, that’s how it happens to me, it comes on sudden, I have to rip off my Philadelphia collar and put on the nice open Headmaster collar while I cool off. I too alternate between hypothermia and sweating profusely. Also I can wake up in the night both hypothermic and yet wet through with sweat!

My mast cells, just taking Cetirizine, are obviously not ‘balanced out’ yet (as you say) as I still wake with puffy hands. I’m starting the Zantac (Ranitidine) next. Do they work ‘together’ in unison, or do they work on seperate things altogether? Roughly how long should I be on these before taking the Cromolyn Sodium, or should I be trying to get on this ASAP?

Keep up the Good Work!!
Kind Regards
Barbara
(UK)

IMHO, Barb, I think getting on mast cell stabilizers is a huge help (although you may not notice the difference for weeks. Hang in there with it.) Zantac is an H2 antagonist, Zyrtec is an H1 antagonist. I’m recommending — FOR OUR FAMILY — triple dose of Zyrtec and single dose of Zantac at night time. I’m not sure if you’ll get Cromolyn or Ketotifen in the UK. Either one should be good… 🙂 Diana

[Barbara]

Hey Diana,
Thanks for that. I’ve managed to obtain an Immunologists appointment late August, so I’ll give him the info and hope he’s ‘on the ball’, so to speak.

Just had a thought this evening but need to ask first, do we know why the villi don’t work ? It’s been proven that I have a certain level of Mitochondrial Dysfunction and I know Dr Paul Cheney’s work talks about Mitochondrial Dysfunction contributing to our heart problems. Could the villi be suffering from insufficient supply of energy, so that they are unable to keep up with bailing out the CSF at the rate required (it’s on a ‘go-slow’ so to speak) ?
Regards
Barbara
(UK)
—————————————————————————————————————————————–
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

[Dr. Diana]

Hey Diana,
It’s been proven that I have a certain level of Mitochondrial Dysfunction and I know Dr Paul Cheney’s work talks about Mitochondrial Dysfunction contributing to our heart problems.
Barbara
(UK)
Barb! Can you tell us what was proven about your mitochondria (and how)? I’m not familiar with Dr. Cheney’s work, either. You know me! I must know it all! 😉 Help? As far as the villi go, they may be blocked by RBC’s upon birth (looking at our head circumferences at birth), but that is pure conjecture on my part… Thanks, Barb!
—————————————————————————————————————————————–
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

[Barbara]

Hey Diana,
It’s been proven that I have a certain level of Mitochondrial Dysfunction and I know Dr Paul Cheney’s work talks about Mitochondrial Dysfunction contributing to our heart problems.
Barbara
(UK)
Barb! Can you tell us what was proven about your mitochondria (and how)? I’m not familiar with Dr. Cheney’s work, either. You know me! I must know it all! 😉 Help? As far as the villi go, they may be blocked by RBC’s upon birth (looking at our head circumferences at birth), but that is pure conjecture on my part… Thanks, Barb!
—————————————————————————————————————————————–
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

Sure, as you know I’ve been fighting to ‘get better’ since the day this happened to me and being the analyst, like you, I needed to know everything about everything, so I could make a more informed decision. I’ve looked at more ‘other conditions’ than I care to confess to and, again like you, I could see similar patterns appearing, time and time again. Too many conditions were so very, very similar and many carried the ‘symptom set’ relating to fatigue.

On my journey down this path (which eventually led me to YOU, by the way!!)I became acquainted with the works of a Professor Malcolm Hooper (who had played a major part in determining the cause of Gulf War Syndrome and a warrior for the cause). I also discovered a Dr Sarah Myhill, a GP in Wales (UK) who has a very informative website, another warrior for the cause. Dr Myhill has successfully treated thousands with CFS/ME. Her website is:
http://www.drmyhill.co.uk

She, along with 2 colleagues devised a test to prove that CFS/ME was not a psychological disorder, found at:
http://www.ijcem.com/files/IJCEM812001.pdf
Brief: 16th January 2009 on the publication of “Chronic Fatigue Syndrome and Mitochondrial Dysfunction”. Our paper (authors: Prof Norman Booth of Oxford University, Dr John McLaren Howard of Acumen, Dr Sarah Myhill). It is conducted through blood tests, so I paid my fee and received a (19 page!) report, the results of the tests, along with normal values and brief interpretation are on my opening post on this ‘The Chronic Fatigue Element’ topic.

Both of these people have been professionally browbeaten and they have tried (unsuccessfully, thank heaven) to strike Dr Myhill off (the last tribunal ended up with her accuser being suspended – poetic justice!!) I believe some of the American pioneers and researchers in this field have suffered similar fates too – it almost seems like a conspiracy! very odd indeed!! Why do the ‘powers that be’ not want us to get better, it doesn’t make economic sense?

Anyway, if you have a couple of hours to spare (EVER?!) I recommend you watch the video by DR Paul Cheney, regarding how the disorder affects our hearts, causing LVDD – wow, he’s good!

http://www.cfids-cab.org/MESA/CFS_Dist.htm

Enjoy,
Barbara
(UK)

[Dr. Diana]

Hey, Barb,

I think many of us have or seem to have mitochondrial disorders (as do our brothers and sisters in fatigue). I think I know why this is happening… It’s next in line for research. I was able to reverse it in myself and my kids. And Barb, lest you doubt if I had extreme fatigue, I was sleeping 20 hours a day, and I WANTED to be asleep the other four! The fatigue was so extreme that I was unable to think, make a to-do list, remember my address, or get out of bed IF THE HOUSE WAS ON FIRE. It goes SO far beyond “fatigue”.

So, if our fatigue’s source is similar, we may be able to reverse this (the medication is by prescription, with a couple of supplements thrown in for the brain fog), and literally, I was BACK in 48 hours. I was afraid my brain had MELTED — and I didn’t think I had much longer. I assumed the changes were permanent. Praise God, I figured it out in time (although my doctor said, “You want me to prescribe WHAT?!”). This clinical trial will take time, because it will need to involve another research center with an IRB (ethics committee) and LOTS of red tape. We may need to get funding, too. Ugh.

It’ll be worth it, though. TRUST ME. 🙂 Diana

[Barbara]

Hey, Barb,

I think many of us have or seem to have mitochondrial disorders (as do our brothers and sisters in fatigue). I think I know why this is happening… It’s next in line for research. I was able to reverse it in myself and my kids. And Barb, lest you doubt if I had extreme fatigue, I was sleeping 20 hours a day, and I WANTED to be asleep the other four! The fatigue was so extreme that I was unable to think, make a to-do list, remember my address, or get out of bed IF THE HOUSE WAS ON FIRE. It goes SO far beyond “fatigue”.

So, if our fatigue’s source is similar, we may be able to reverse this (the medication is by prescription, with a couple of supplements thrown in for the brain fog), and literally, I was BACK in 48 hours. I was afraid my brain had MELTED — and I didn’t think I had much longer. I assumed the changes were permanent. Praise God, I figured it out in time (although my doctor said, “You want me to prescribe WHAT?!”). This clinical trial will take time, because it will need to involve another research center with an IRB (ethics committee) and LOTS of red tape. We may need to get funding, too. Ugh.

It’ll be worth it, though. TRUST ME. 🙂 Diana

Hi Diana,
Oh I certainly believe you! Before my accident, I used to think I was superwoman, always oodles of energy and endurance, busy doing something almost every bit of the day – I couldn’t believe I’d ever be like this.

My energy reserves are so very limited that I have to forfeit many basic-living tasks most people take for granted every day. I feel ashamed that I have to live like this but I have no alternative. For instance, just having a shower drains me of energy, so I only have 2 per week – then promptly fall asleep once my carers gone; getting dressed and undressed uses my vital reserves, so I sleep in my clothes, then I only have to get changed once a day (if I can manage it, as sometimes I don’t even have enough energy for that!).

So, I can’t wait for the treatment trials to begin. As I’m sure you’re all too familiar with, I rely on physical help in everything I do because without that help, I just couldn’t complete even simple tasks. I’m 58 but every day I function like I’m 98! I’ve felt so helpless, frustrated and incensed by it all that I’ve been inspired to write a poem, which I’ll send a link to when I eventually release it.

Since undergoing Dr Sarah Myhill’s ‘mitochondrial function’ tests, I’ve been referred to one of 3 NHS centres here in the UK who specialise in Mitochondrial Dysfunction. The consultant there told me that they are now looking at mitochondrial dysfunction as a cause for Chronic Fatigue (yeah, at last!). So I’ll be bringing the results of your trials to their attention when you publish them, if that’s ok.
Regards
Barbara
(UK)
—————————————————————————————————————-
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

[Dr. Diana]

Thanks for keeping us in the loop, Barb. From what I can tell, many folks with chronic illnesses end up with mitochondrial issues. It is my intent to look for (and treat) the FIRST domino, so that we don’t get to that point. Your empty sella, for example, is likely NOT due to mitochondrial disorders. I am taking a step BACK to see what ties everything together. Make sense? Now, having said that, anything that helps you feel better/stronger, I’m ALL FOR IT. 🙂 Diana

[Barbara]

Thanks for keeping us in the loop, Barb. From what I can tell, many folks with chronic illnesses end up with mitochondrial issues. It is my intent to look for (and treat) the FIRST domino, so that we don’t get to that point. Your empty sella, for example, is likely NOT due to mitochondrial disorders. I am taking a step BACK to see what ties everything together. Make sense? Now, having said that, anything that helps you feel better/stronger, I’m ALL FOR IT. 🙂 Diana

If you treat the first domino, does it have a ‘knock-on’ effect at reducing all of the other symptoms ?

Empty sella (for those who are new to this terminology, it means the pituitary gland that has been flattened, probably by pressure from excess CSF, raising the intracranial pressure).

I wonder, could any of the raised intracranial pressure that has caused my empty sella be caused by a blockage/or sluggishness in the lymphatic system ?
Regards
Barbara
(UK)

[Barbara]

Well, would you believe it, after paying for the private testing, which showed I did have very poor mitochondrial function, I was referred by my GP to one of the 3 NHS Mitochondrial Centres in the UK, who have carried out their blood testing and neurological assessment which, according to them, shows I’m not suffering from a mitochondrial disease! – So, what’s stealing/blocking my energy then ? They had no other explanation for my symptoms. So, I don’t know where I am with this one.

They also carried out a genetic test for MELAS which also proved negative, which is a good thing BUT doesn’t help me understand why I’ve had the PE situation and all of the little ‘episodes’, one of which felt like a heart attack (had abnormal heart-traces since then, where they cannot rule out anterior infarction).

Then there was what I thought was a stroke, where the ball of my right foot went numb along with my 3 middle toes, which took months to go right and 9 months later showed up as abnormal signals on a test where they put needles into your muscles. The original hospital had diagnosed me with anxiety when it happened!!

Following that I had something which felt like a TIA (mini stroke) where I felt warmth travel up my neck and I went disorientated and felt odd for about 30 minutes. Then a few years later I had Pulmonary embolisms (PE’s) in both lungs, with pleural effusion and a partially collapsed right lung – which should have finished me off but it didn’t (don’t you think we must all be made of strong stuff to tolerate all this?)

So anyway, my blood’s not averse to clotting for some reason – but, at least now I know, it’s not MELAS!
Regards
Barbara
(UK)
—————————————————————————————————————-
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

[Barbara]

Hey, I have some good news regarding my progress. Back in July 2012 I could only cycle on my exercise bike for 30 seconds before the ‘lactic acid’ type pain set into my leg muscles and I had to stop and wait a little while for it to disperse. Well that was also true up to a couple of months ago, which was the last time I tried.

However, on Saturday I decided to have another go and managed 5 minutes 25 seconds and I still wasn’t in pain in my legs. I’m certain I could have gone on longer but I had to stop due to pain in my chest (POTS!)

In the meantime I had changed my drug regime to eventually include the following:-

CoenzymeQ10 (Ubiquinone) – 90mg taken 3 x daily with food
Cetirizine – 10mg 3 x daily
Diamox – 250mg at night
Twice weekly use of ‘Circulation Booster’ machine
Twice weekly baths in Radox muscle soak
Vitamin C 1000mg effervescent with my evening meal
Vitamin B complex, with other vitamins & minerals including zinc & magnesium.

So I do not know how to precisely identify which, or which combination is responsible but, whatever it is it’s a damn good start. I can’t wait to see what improvements 2013 brings!
Regards
Barbara
(UK)

[Barbara]

Even though the NHS Mitochondrial Function Centre didn’t detect ‘Mitochondrial Disease’, using their tests late last year, they have sent me an appointment for a review in October, so I wondered, why do they want to see me again, if they say I dont have Mitochondrial Disease ? Is ‘Dysfunction’ different to ‘Disease’ – does anybody know ? With regard to the Genetics aspect of Fatigue, it is all in it’s infancy at this stage, so it may be that they will have a clearer picture by October.

Anyway, I’m not too concerned, I’m still going along with the Mitochondrial Dysfunction diagnosis of Dr Myhill’s and addressing it accordingly. I’ve just sent for some more tests which they recommended, to try and get to the bottom of the cause, so I’ll keep you posted.
Regards
Barbara
(UK)

[Give My Daughter the Shot!]

Barbara,

Thank you for giving me Dr. Cheney info. I requested Dr. Cheney’s IVRT and ‘lo and behold’ : IT IS CONSISTENT WITH A RESTRICTIVE FILLING PATTERN! Just like Dr. Cheney said. Then he said that the cardiologist wouldn’t understand and ‘lo and behold’, I’m sitting before my cardiologist today (the one who I was told specialized in genetic disorders but actually specializes in congenital heart deformities – like that is in any way similar) and just like Dr. Cheney said – HE SEEMED CLUELESS! I pointed out that I had both relaxation impairment and also a restrictive filling pattern, he was like ‘ok, how bout a sleep study’. OMG! Also, apparently restrictive cardiomyopathy is some sort of joke but I can’t imagine this is so by the horrific way I feel. He also said the tech was not supposed to tell me that I had mitral valve prolapse and that the thickening of my mitral valve was only slight – well, it wasn’t noted as being thickened at all on last year’s echo. And then there are the regurgitations that are common….

Dr. Cheney also mentions fibrinogen as one of his blood tests and I’m low. I could only get so many of them because I only have access to RML and not LabCorps. I’m still high in red blood cell arena and eosinophils.

A sleep study. That’s like taking a Mercedes Benz to a lawnmower shop for service. Gimme a break! I do, also, have immunology appt end of this month. I’ll keep you posted. I just can’t believe that I’m being left to ‘fend for myself’ for years now.

Sad, I’m way too sick to research this mess. Then when I ‘hit paydirt’, nobody gets it. What’s the point?

I do want to thank you though, Barbara. I’ve forgotten what I saw as far as Cheney’s speech but it was so incredibly on target. Thanks again.

[Barbara]

Hi GMDTS,
Well at least you made me laugh! . . .but you’re so right in what you are saying. Is there an overall ‘medical governing body’ (or medical Ombudsman) in the USA? Both these bodies need to be made aware of this large number of the population, with this condition, who are not getting fairly treated (and oftentimes mis-treated!) – doesn’t that breach some convention or other ? Surely doctors/consultants need to ‘keep up’ with medical progress. this condition has been around certainly since the 1980’s and before, that’s over 30 years, yet recognition & treatment is still in the dark ages, if there at all!!

Whatever governing body is in charge of teaching ‘up and coming’ doctors, needs to incorporate how to recognise the various ‘signs’ (physical anomalies) that can occur in our condition (good grief, I have made a list of many of these – so surely one of them could have done so!!)

For instance, the Cardiologists should be looking at the heart structure, heart function & circulation for the following signs:-
1. Left Ventricular Diastolic Dysfunction
(according to Dr Cheney there is compensatory dilation of left atrium therefore a large or larger atrium is often found)
2. Low Stroke Volume (SV) due to poor mitochondrial function causing poor filling (not necessarily hypovolemia)
. . . here’s the equation (SV=PPx2) PP stands for Pulse Pressure (Systolic – Diastolic = Pulse Pressure).
3. Innappropriate Cardiac Output (CO) for POSITION
. . . here’s the equation (CO=HRxSV) HR stands for Heartrate.
4. Mitral Valve weakness
5. Aortic Stenosis

Tests required are:-
a) Echocardiagram
b) Specific BP/HR Studies –
laying(flat;left;right);sitting;standing;all fours;(right/left arms/legs)
c) 7 day holter monitor (24 hours doesn’t always capture this conditions essence)
d) Tilt Test
e) Exercise Test

. . . . . . but what is our condition ? It doesn’t help that our overall condition does not have a name, it is in fact a combination of several sub-conditions (EDS, POTS, CFS, etc) that appear to occur together.
Regards
Barbara
(UK)

[Barbara]

Hi All,
I seemed to have gone off on a tangent there, down the heart route!

I have been revisiting some of the excellent videos out there on Chronic Fatigue and the research that’s going on to try and help us and I wanted to bring attention to the fact that there are a page of videos here (it’s called Mast Cells for Dummies!):-

https://sites.google.com/site/fansofdrtheo/neurotensin-presentation

(you need to cut & paste this onto your browser, as the link doesn’t work)

by Dr Theoharides, that talks about Mast Cell Activation, certain treatments, how it’s connected to Autism and the last one deals with Chronic Fatigue. Ok, it is pushing his Neuroprotek supplement but there is useful background information to help understand the problem.

I think many of us suffer from the same ‘condition’ with maybe a slightly different ‘flavour’ to it, if you get my meaning. We all seem to have many of the same symptoms but, depending on who has diagnosed it may receive different diagnoses – but, however which way you look at it, there seems to be a lot of Mast Cell Activation involved, with it’s associate inflammation, be it of the brain, of the gut, or of the tissue, or whatever. This is where Dr Diana’s Zyrtec/Zantac protocol makes sense.

I have been looking at other treatments against Mast Cell Activation (MCA) and I may have mentioned them before (but I know how easy we forget!). There are foods containing Quercetin (which is a flavinoid that helps fight MCA, inflammation, cancer). Quercetin is in Grapefruit, Cabbage, Kale for example but there are more. There’s also Luteolin, which particularly helps the brain (according to Dr Theoharides), olive oil is a source, so I now use the ‘light’ version of this, in all of my foods that are cooked, fried or baked.
Regards
Barbara
(UK)

[Barbara]

Even though the NHS Mitochondrial Function Centre didn’t detect ‘Mitochondrial Disease’, using their tests late last year, they have sent me an appointment for a review in October, so I wondered, why do they want to see me again, if they say I dont have Mitochondrial Disease ? Is ‘Dysfunction’ different to ‘Disease’ – does anybody know ? With regard to the Genetics aspect of Fatigue, it is all in it’s infancy at this stage, so it may be that they will have a clearer picture by October.

Anyway, I’m not too concerned, I’m still going along with the Mitochondrial Dysfunction diagnosis of Dr Myhill’s and addressing it accordingly. I’ve just sent for some more tests which they recommended, to try and get to the bottom of the cause, so I’ll keep you posted.
Regards
Barbara
(UK)

The tests I sent for were:-
DNA Adducts Test – looks for things that are ‘stuck’ onto your DNA that shouldn’t be there.
Translocator Protein Test – looks at why ATP is not getting out of the mitochondria efficiently.

I may have explained this before but I will do so again in case it was on another forum topic. ATP is energy but it has to cross the mitochondria membrane, to get into the cell, so it can be used. If you want more info on this visit:-

http://www.drmyhill.co.uk/wiki/Translocator_protein_studies

Thyroid test – to see how efficiently my thyroid was working.
Hypochlorhydria Test – to see if I was producing sufficient stomach acid to digest my food properly

http://www.drmyhill.co.uk/wiki/Hypochlorhydria_-_lack_of_stomach_acid_-_can_cause_lots_of_problems

I’ll let you know how I got on.
Regards
Barbara
(UK)

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