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Hi All,
So many of us suffer the frustrations of Chronic Fatigue, where you’ve all on to just see to yourself, let alone, run the house, or have a social life!I always have been determined to get better, ever since I had my fall 10 years ago and a couple of years ago, my spinal injuries unit recommended I get a ‘recumbent cycle’ to exercise on at home. Initially I could easily do more than a minute before the pain set into my muscles (apparently this pain is caused by lactic acid – like marathon runners have, when they ‘hit the wall’!!), then after a short rest, the pain dissipated and I could cycle a little more. I expected to slowly build up my stamina and gain endurance in the process. Well after quite some time, more than a year, I realised the opposite was happening, I could now only cycle for 20-30 seconds before the pain started. (So much for graded exercise treatment!) I knew this wasn’t right, I knew I should be improving but I wasn’t.
After quite some research into ATP – your body’s base energy unit, I concluded there was something wrong in my body’s ‘ATP recycling’ process. Here in the UK, a couple of years ago, 3 very dedicated people developed a blood test to determine the level of energy efficiency/deficiency during this process, so I thought I’d give it a go, just to see how fatigued I was clinically, a benchmark measure, so to speak. They tested a few other things as well.
Just in case this info might be of use to anyone, here are extracts from the report:
“Results of [my] mitochondrial tests are really very poor” but it goes on to say that, although they are poor, they are not bad enough to cause the level of fatigue I am suffering. They say this is likely to be from poor, if any Pituitary function, as could my hair loss, dry skin and low temperature. (note: the raised intracranial pressure many of us suffer eventually causes an Empty Sella – where the pituitary sits).The report also says that poor energy delivery to the heart results in low cardiac output and that ‘allergy’ is also likely to be a major player in my ill health! For those curious to know the exact results, they were:
ATP levels 1.47 normally 1.6-2.9 (deficient) No D-Ribose at this stage due to gut.
Ratio ATP/ATPmg 63 normally >65 (slightly deficient)
Oxydative Phosphorilation 51.8 normally >60 (slow due to deficiencies)
Translocator Protein out 22 normally >35% (moderately blocked)
Translocator protein in 79.7 normally 55-75% (shows rapid depletion of ATP)
Mitochondrial Function score 45 normally 1.00-3.00 (very poor)
Cell free DNA 18.5 normally 9.5 (definate increase in cell degradation)
SODase 35 normally >40 (very poor with partially blocked Mn SODase gene)
Glutathione Peroxidase 58 normally 67-90 (poor selenium status)
Due to my gut not functioning properly (and probably sweating) episodes etc, I am vitamin and mineral deficient, in the following:
Iodine
B3 – 10.8 normally 14-30 (fairly marked deficiency)
B12 – needs supplementing
Magnesium – needs supplementing
Co Enzyme Q10 – 0.43 normally 0.55 – 2.00 (low)
L-Carnitine – borderline
Selenium
Zinc
Copper
Manganese
Knowledge of some of this may help progress better management, or a cure maybe.
Regards
Barbara
(UK)
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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) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.Hi Barbara,
I, too, kept telling myself that I would ‘ramp up’, I would ‘ramp up’ while doing an hour a day, few times per week Bible study, library, or church, volunteering. Could not figure out what on earth could possibly be wrong due to it all being way too illogical. Tried the ‘delusional way out’ but, no matter how much I tried to pretend, I could not function. No matter how much I told myself in an internal fakey cheery voice, ‘Oh, that’s ok’ about the staggering deficiencies I was experiencing. No matter how much I tried to not worry about it and it would go away – NONE OF IT WORKED!!!
Yes, I understand CFS. I suffered from it for a long time while doctors acted like I was a liar and told me I was making myself depressed by thinking about something bad. What a load of horse ….! My body was, randomly, shutting down and failing me in a vast assortment of ways, every single day. That is what alarmed me so much – I WAS NOT thinking about anything sad or bad. It was just happening. Now, that’s pretty scary – I don’t care who you are or how stoic! My genetic doctor told me, in a non-insulting ‘duh’ sort of way that chronic fatigue is part of EDS.
Like you describe, I couldn’t figure out why I wasn’t ‘ramping up’. Who can’t ‘ramp up’ from 4-5 sedentary hours per week?! In single hour intervals!? You’ve gotta be kidding! That just seems impossible and is completely illogical! Logically, one would be able to ‘build off of’ the base and enhance; add an additional hour, add another day, SOMETHING!! ANYTHING!!
Thank you for your feedback. I need concrete proof for these %^%$^%$% doctors. So sick of it. I hate having to be this proactive. If I can only wring 4-5 hours out of myself, I for …. sure don’t want to spend it as an advocate for my own health. I always thought that is what doctors were for. I’m not a doctor and I surely don’t get paid like a doctor – heck, I don’t even get paid like an earner – since my body won’t allow me to work/earn. I don’t want to be a doctor, I just want to be myself and learn to accept some of this mess that I can’t ‘blow off’. Sorry, can you tell that someone feels a little frustrated. Anyway, I think I’m also going to try to match my bloodwork results with the ones you mention. They’ve not been reviewed with me so I have no idea of what the significance of highs and lows are. Maybe I can post the test abbreviations and someone can tell me what they mean (or what they think they might mean, since it’s not their job to review my labs with me nor should it be their liability). Also, my tell-tale skeletal deformities, etc – are being seen as more benign rather than a sign of something more global. I know, from living in my skin, how badly I hurt and how dysfunctional my body is. I AM POSITIVE THAT TESTS WOULD SHOW THIS! I don’t believe that the highs and lows are no biggie. I don’t believe that having a massive knot of bones that hurts like crap and prevents me from lying on my back (sometimes hurts to sit) is normal. I actually think it might be pinching nerves because I’m having some pretty major leg problems (I think circulatory also). It really gets old.
I went through a stage of thinking I had the type of AIDS that existed in the 1980s (but knowing that I couldn’t have acquired it). I went through a stage of thinking that I must be systemically poisoned. My whole body is a disaster area. Sick part is that, throughout my life, if I’ve said that something is wrong – it’s been ‘ALL OF THAT AND A BIG BAG OF CHIPS TOO’. I’ve never exaggerated anything medical and it’s always been significantly worse than I’ve stated – as PROVEN by DIAGNOSTICS!!!! Where’s that life?? Where are my diagnostics?? Where’s my proper course of treatment?? Where’s my knowledgeable physician??
It’s like all of the diff doctors just want me to be positive and don’t worry. What they don’t realize is that they aren’t collaborating with one another. They don’t realize the global affect of my health situation. I can’t sound crazy so I have to choose one thing to talk about – what a joke! That’s actually the policy too – pick one thing! Seriously! They sometimes act as though if they pat me on the head and cheer me, it will disappear. Don’t they know that I’ve already tried that – for over a year!!! I didn’t try for help until my own, incredibly strong, personal will to be ‘just fine’ had been completely exhausted!! More than anyone else in the whole world, I want to be positive and don’t worry!!!! When a person’s body is blowing up in their face every day for years, it just isn’t that way anymore. As you said, Barbara, it affects everything: social interactions, ability to go outdoors, ability to stand/think/sit, PLAN, set goals, accomplish basic tasks, self-esteem, identity, earn a living, and EVERYTHING ELSE you could possibly imagine!! There aren’t even words to describe it.
I have a bit of a tough time calling it fatigue because the general population believes they can relate to it and thinks, ‘well, take a nap’ or ‘get some rest’. I have to call it weakness (though that doesn’t describe it either). Exhaustion, however, people think that after a good night’s sleep it resolves. It shouldn’t be described by a mainstream word. There is no escape, no relief, no end… It’s a trap that makes no sense. It’s as if I haven’t slept in years. I realize how incomprehensible that is. I am fully aware of how illogical it is. I, myself, am dumbfounded by what I experience. I can’t believe it myself – and, yet, I am trapped in it – every day! Crazy, right?!
Thank you so much for posting, Barbara!
You sum it up well, basically our physical state is ‘devastating’ and no-one could comprehend it lest they suffered it, for certain.
The one thing that surprised me about my CFS/ME test results was that I was deplete in many vitamins and minerals, even though I thought I ate a well balanced diet with lots of fresh vegetables. I think there are 2 causes for this depletion:
1) Dr Diana points out the signs of ‘malabsorption’ in our nails (the vertical ridges) so despite what we are eating, without the gut working effectively, we are at the disadvantage of not absorbing things efficiently. So we have to get to the bottom of the gut issues and take control back again.
2) Many of us sweat disproportionately. I wake up sweating oftentimes, even when I’m cold to the touch, usually my body feels ‘in crisis’ when this happens. At other times during the day, I can flush and sweat for no apparent reason too.
So, I’m going on a vitamin and mineral regime, I’ll let you know if it makes any difference.
Regards
Barbara
(UK)I assume the sweating stuff is autonomic dysfunction but maybe, just maybe, sometimes our bodies might be trying to get rid of ‘toxins’, which we also do by sweating. Now the problem with this is, many of us do not have the energy to shower immediately after sweating (and it happens too often) but if we do not wash after sweating, we simply re-absorb whatever it was back throught the skin, therefore never actually get shut of it.
I’m curious, has anybody had any ‘Toxin’ tests, at all ?
Regards
Barbara
(UK)I never looked at the ‘weird changes in nails’ post because I didn’t think I had any weird changes to speak of – especially in the scheme of things. I, too, have vertical ridges on my nails. How weird. At least the vertical ridges don’t hurt. Of course I wouldn’t have noticed that. LOL! I will look at that post now and chime in if applicable.
I wouldn’t know what toxins to test for. I need to prepare very specific diagnostic requests with great strategic precision. I am PTSD over needles and have to group my bloodwork.
I need to group other diagnostics, thoughtfully and carefully, so that I can be as effective and efficient as possible.
It’s tough to do this without any formal medical training. Especially, when I feel so horrific every day. There’s another part of me that still doesn’t want to believe this has happened to me. It’s a ‘tall order’ for me to figure out how to orchestrate all of this – especially without supportive doctors. That part is very hurtful. My genetic doctor told me that I would have to educate my doctors and I bawled and bawled at the notion of returning to the ‘scene of the crime’ where I had been so dreadfully mistreated. It seems absurd to think that I would have the energy to break through the trauma that has been inflicted onto me with my meticulously/carefully/thoughtfully/educated/thorough/captivating/sensible sales presentation for which tests I require and why. Then, if I’m able to get the diagnostics – I’ll have to figure out how to ‘read’ them myself. Then present results back to doctor who probably misread them in the first place. Seems pretty insane to me. Plus, I’m not feeling so good. I mean, if I could do all of that – I’d be at work and living the life for which I am accustomed to – not being poor, sick, and miserable.
Thank you, again, for your info. When God gives me the strength to do so, I will review everything and begin to make sensible order of it so that I can take it to my doctor. I just have to get myself psyched and be strong. Worst part, IF I were able to get myself psyched – it wouldn’t be ‘on cue’ but random. There is no telling if I’d be ‘on my game’ at the point my doctor enters the exam room. If I randomly flounder and brain fog – it’s potentially a wasted appointment. Know what I mean. I really need to ‘hold my own’ or the doctor senses weakness and pounces. In this case I hear things like; I’m depressed, it’s in my head, get on with my life, my bloodwork is fine and no reason I should be acting this way, etc. So so much has to align for me to accomplish anything at all, it seems. I truly hate that! At the mercy of a body that randomly and severely betrays me. My doctors appointments now are like going into battle. I’ve never had that before.
I’ve thought that I’d be better off preparing a wrongful death suit versus trying to acquire treatment. It would be a better use of my very limited resources. I don’t mean that in a pity way but more in a DOCUMENT EVERY LOUSY THING sort of way. You want to neglect me, I’ll document it. You want to insult and mistreat me, I’ll document it. ETc. I detest what I am going through and hate to know that other people feeling this bad are going through the same thing.
Anyway, if you do come up with relevant toxicology testing, let me know and I’ll see if there is any chance I can find a way to present, justify, and acquire the test. I’ve wondered about mould since I had been exposed a few years ago. What toxicology are you thinking? Candida?
I don’t know what type of toxins are involved, I just know that the chronic fatigue doctor says in her report.
“Mitochondria can be injured in many ways – the most obvious examples are viral infection and poisoning by toxic chemicals (which can be exogenous from the outside world or endogenous from within), but chronic low-grade infection, allergies, hormone disturbances also play major roles. As you can see from the results of Barbara’s mitochondrial function tests below they are really very poor, characterised by toxic blockage and deficiencies and they go a long way to explaining many of her symptoms in particular the fatigue, joint and muscle pain, foggy brain and heart symptoms.”
Whether her recommended tests will identify these toxins and her treatments will clear this, remains to be seen but I, sure as heck, am going to try it, along with Dr Diana’s recommendations (when I finally manage to obtain Diamox from my GP!) of course – because Dr Diana’s work has certainly identified several anomalies, visible in my radiology, particularly the excessive amount of CSF above my brain, that I’d been suspicious of for a while – I can’t wait to get this reduced, I know it’s going to make a great difference. The Driscoll Theory just all makes perfect sense to me.
Regards
Barbara
(UK)Barbara – its disappointing to say the least that your dr won’t prescribe diamox. Maybe you could buy it online?
I will start another thread on Low Dose Naltrexone – but I think it is one of the few things that have helped me and people in the UK can’t get that either. We have to pay full whack here for a compounding pharmacist to make it up, but I now buy it from a Canadian pharmacy (the parcel was from India) and dilute it. There is a utube video on how to dilute a 50mg tab, with 50ml water. you take 4.5 mg or mls. Look into it as it really helped with that hung over feeling I used to have every morning. You don’t need a script to buy it from River Pharmacy. They may also have diamox?Jill
Hi Jill,
Thanks for your concern, hey no need to worry now, because the good news is that I was called in for a ‘short notice’ appointment with a neuro-opthalmologist, who put drops in my eyes, then looked into them with a machine, following which he said I could have Diamox for a month! Yeay! . . . . so, I’m just waiting for the chemist to deliver it.So, if there’s anyone else in the UK having difficulty getting Diamox and you’re having symptoms of raised intracranial pressure that’s affecting your vision, ask to be referred to a Neuro-opthalmologist. The symptoms I was having were – eye pain (the sort that feels like pressure from behind the eye) especially first thing in a morning; intermittent double vision (Diploplia) where if I looked at someones face I could see one set of features on top of the other (even with one eye closed!); Intolerant of bright light (Photophobia) and Headaches (or brain ‘soreness’ especially over the top of the head). I think the constant high pitched tinnitus and the deeper pulsing sound I wake up with is related too.
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) Fully Blown Empty Sella (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)& Vitamin (C,D,B3,B12) Deficiencies!Getting Diamox — funny you should mention neuroophthalmologists. Most eye doctors (including therapeutic optometrists. ahem…) are comfortable with Diamox. We used to give it out in HUGE doses for “pseudotumor cerebri” (high intracranial pressure evident by looking at the optic nerve). The trick to know, is that we can have “IIHWOP”: idiopathic intracranial hypertension without papilledema, and that is something most doctors forget about! Most PCP’s are comfortable prescribing diamox to prevent altitude sickness. A week’s worth is PLENTY to know if you are responding well. Just watch the contraindications – sulpha allergies, aspirin, etc. Soooo, do you feel a trip to the mountains coming on? ha. 🙂 Diana
http://www.whitneyzone.com/wz/ubbthreads.php/topics/6444/Re_Diamox_Acetazolamide_for_ac
I am allergic to sulfa (had pretty bad hives from bactrim years ago) or, at least, assume that I am since it was a pretty intense and widespread reaction. Does this mean that I cannot take Diamox? I found the above link that says that it’s sorta diff from sulfa. Any final verdicts? Would it be dangerous to try it? I don’t need anymore trouble, trust me!
http://www.whitneyzone.com/wz/ubbthreads.php/topics/6444/Re_Diamox_Acetazolamide_for_ac
I am allergic to sulfa (had pretty bad hives from bactrim years ago) or, at least, assume that I am since it was a pretty intense and widespread reaction. Does this mean that I cannot take Diamox? I found the above link that says that it’s sorta diff from sulfa. Any final verdicts? Would it be dangerous to try it? I don’t need anymore trouble, trust me!
Interesting thought! I will need to ask a specialist about this. I can tell you that three different physicians I’ve consulted with have gone ahead –some more cautiously than others — and prescribed it. One did a scratch test first, one had them in the hospital, and the other thought the fear was “over-rated” and just prescribed it! I see a specialist in a couple of weeks and will find out for us her thoughts, OK? Meanwhile, you know if you are to the point of trying it (with caution and with your doctor’s help) or not. I was ready to jump out of a window or just go straight for decapitation, I was soooo miserable. One night with Diamox — poof — head/neck ache gone. Mind you, I was told I was allergic to penicillin, too, but most of us outgrow that allergy. One brave doctor asked me, “So, shall we try it?” 🙂 Obviously, I’m still here, and penicillin is my go-to antibiotic. Those germs in my body had never seen such a thing before! ha. Talk to your doc… And let us know! 🙂 Diana
Hi Diana,
I’m glad you mentioned about the penicillin thing, I too thought I was allergic to it and therefore have denied myself of it for most of my life.
Regards
Barbara
(UK)Hi Diana,
I’m glad you mentioned about the penicillin thing, I too thought I was allergic to it and therefore have denied myself of it for most of my life.
Regards
Barbara
(UK)Funny thing, allergies and sensitivities… I was allergic to penicillin, my son was allergic to cyclosporin. We both take those drugs with no problems now. I’m going to speak to a specialist soon about how we can build up a “tolerance” to sulpha if it’s an issue. My sister had a horrible peanut allergy as a child. I caught her sneaking peanut butter as a teen (you know sisters). She somehow just “knew” she had out-grown the allergy, she said. 😉 See? I’m not the only one in the family willing to stick my neck out in the name of science! ha. My parents would have SHOT her, if they’d known she had been doing that for years! 🙂
I assume the sweating stuff is autonomic dysfunction but maybe, just maybe, sometimes our bodies might be trying to get rid of ‘toxins’, which we also do by sweating. Now the problem with this is, many of us do not have the energy to shower immediately after sweating (and it happens too often) but if we do not wash after sweating, we simply re-absorb whatever it was back throught the skin, therefore never actually get shut of it.
I’m curious, has anybody had any ‘Toxin’ tests, at all ?
Regards
Barbara
(UK)I had a toxins test — it came out fine. I also alternate between hypothermia and sweating profusely. The sweating for me is usually a “flush” from histamine release. Is that what happens to you? I can feel it coming and start pulling off covers and clothes, then it stops and I’m hypothermic again. This STOPPED once I had my mast cells and anti-inflammatories balanced out. It only returned when I injured my shoulder, and it returned with a VENGEANCE. It is settling down once again. When this happens, though, I am especially non-functional, and PUFFY from histamine release. I am also more “fibrotic”. This is something we’ll talk about on a video soon — our tendency toward fibrosis — liver, lung, breast, lymph nodes, shoulder, etc. I think fibrosis is occurring inside of our vessels, too. That is not good, but I think we can stop this down hill slide. Working on that! 🙂 Diana
I assume the sweating stuff is autonomic dysfunction but maybe, just maybe, sometimes our bodies might be trying to get rid of ‘toxins’, which we also do by sweating. Now the problem with this is, many of us do not have the energy to shower immediately after sweating (and it happens too often) but if we do not wash after sweating, we simply re-absorb whatever it was back throught the skin, therefore never actually get shut of it.
I’m curious, has anybody had any ‘Toxin’ tests, at all ?
Regards
Barbara
(UK)I had a toxins test — it came out fine. I also alternate between hypothermia and sweating profusely. The sweating for me is usually a “flush” from histamine release. Is that what happens to you? I can feel it coming and start pulling off covers and clothes, then it stops and I’m hypothermic again. This STOPPED once I had my mast cells and anti-inflammatories balanced out. It only returned when I injured my shoulder, and it returned with a VENGEANCE. It is settling down once again. When this happens, though, I am especially non-functional, and PUFFY from histamine release. I am also more “fibrotic”. This is something we’ll talk about on a video soon — our tendency toward fibrosis — liver, lung, breast, lymph nodes, shoulder, etc. I think fibrosis is occurring inside of our vessels, too. That is not good, but I think we can stop this down hill slide. Working on that! 🙂 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)
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