The Chronic Fatigue Element

[Barbara]

Or, I’ve read that you can make your own ‘Magnesium Cream’ (though I haven’t tried this yet!):-
Mix a tablespoon of epsom salts, using as little cooled pre-boiled water as possible, until it dissolves, then add this slowly to some Aqueous cream, or similar and apply directly to the painful area (or to the arms, legs or whatever, if you’re not in pain). I’m gonna give it a go though.
Hope this helps,
Regards
Barbara
(UK)

Hey, now I have made some of this and tried it for the last 5 days and it seems good. I had to dissolve the Epsom Salts with hot water though, then I let it cool before mixing with some night cream, I’ve slapped it on my arms every day! You’ve got to keep them covered though, as it does rub off on other clothes but that’s no real problem.

[Barbara]

Hi all, I’m new.
Regarding magnesium I just learned about a form called Magnesium L-threonate. Here is a quote from Jarrow’s product: “Magmind (magnesium L-threonate, or magtein) is the only form of magnesium that has been shown by promising research to readily cross the blood-brain barrier and provide significant positive effects on cognition, memory and brain health. Magmind may also improve relaxation and sleep quality.”
Also interesting comments in the review section of this product.
I’ve always craved magnesium. Perhaps this form will get rid of my headaches?

Ps- Recently learned I have hypermobility syndrome and am starting to research about it. Thanks for all this information.

Hi Anneal,
Yes, I’ve looked at one or two documents and products about this, though I haven’t seen a claim for it doing anything different (than what I’ve read about basic magnesium) but I could be wrong, as I haven’t gone into it in any depth. I have noticed that it is much more expensive though. I’m still experimenting with the cheaper version for now. Are you thinking of trying it ? If so, please let us know how you get on with it.
Regards
Barbara
(UK)

[Dr. Diana]

Yes, Anneal, please let us know how you do! I try to be sure I get the magnesium citrate form (mainly) because it helps with alkalinity (especially important for those of us with high intracranial pressure and taking Diamox — do you think your headaches are from high intracranial pressure?). I ALWAYS look for peer-reviewed journal articles to verify the extra expense for supplements espoused to be superior. Obviously, anyone can say anything on the internet, but is there science behind it? I’d love to know! 😉

[Barbara]

I promised to inform you of the results of my:
Translocator Protein Test – looks at why ATP (the energy currency) is not getting out of my mitochondria efficiently.

Which is as follows:
“B has abnormalities to her Translocator Protein function, in the form of oxidative damage, secondary to the presence of toxins, high levels of aldehydes and low normal pH at the outer membrane (wait for it) which is probably a contributary cause of her muscle pain”.

So, just gotta sort that out as well then!
Barbara
(UK)

. . . . so, to update . . . . I am trying to help counteract future oxidative damage by taking Vitamin E (an anti-oxidant). I am going to purchase a ‘Far Infra-red Sauna’ (a portable, quilted, zip-up, plug-in model) to sweat out the toxins, showering immediately afterwards, to remove any toxins from my skin.

I’m going to hopefully try to reduce the acidity of my body, by green and leafy vegetables more often (brocoli, cabbage, kale, spinach, sprouts, to name but a few very useful ones), along with cooked beetroot (not pickled!).

[Dr. Diana]

Thanks for sharing this! Barb, I think it’s a misconception that you can effectively sweat out toxins — I wish I had the article at my finger tips. Will you be careful, though? I’m curious — how do your kidney numbers look? My BUN/Creatinine and even my EGFR was all over the place for years (of course the docs ignored it!). Funny, before I was sick and had to study all of this (the good ol’ days!), I used to go to the sauna after a work-out, but I never could really sweat! HA! Wow, did I have some autonomic problems then, or what? 😉 I do believe we need to be more careful about dehydration in those saunas with weird kidney function numbers, for SURE. Perhaps yours are OK? ALKALINITY! I’m a HUGE believer in staying alkaline! Working more on the what’s and why’s of that right now, as a matter of fact! One doctor on my team told me that 70% of the Chinese population had alkalinity machines in their homes for their water for health reasons. OMG! Are we that far behind?! I swear, China will take over the world soon! Thanks again for sharing this! 😉

[Barbara]

eGFR – or in my case GFR has been up and down a little over the years since my fall. In 2008 it was >90, I think the lowest it’s been has been 80. I found a mention of CKD 1 (like you, looking for answers) but no-one medical has brought this to my attention, or shown any concern, so maybe it’s normal for someone my age ?

BUN – only ever had one of these tests (whilst in America funnily enough!), this was 11 (normal range 7-23) so that was ok.

Creatinine – I’ve had 20 tests, the average of which is 69.8, considering the normal range is 60 – 120, I would say that I’m always teetering on the edge of Dehydration.
Regards
Barbara
(UK)

[Barbara]

I just wanted to clarify something, regarding the B Vitamins. Early in my research, I read somewhere they should be taken at night BUT I’ve found, if I take it last thing at night, I have a bad night (with much waking up!). More recently, I read on Dr Myhills website that it SHOULD NOT be taken at night because it can cause insomnia – er yes, I can confirm that!.
Regards
Barbara
(UK)

[Barbara]

During the second part of last year I was feeling like my body was finally giving up. I’ve felt close to death a few times, since all of this condition started following my head and neck injury in 2002, but these were mainly for acute reasons – something going terribly wrong all of a sudden.

This time was different, it was a slow kind of ‘grind to a halt’ type feeling, I barely had enough energy to do anything and seemed to spend a lot of the day either sleeping, or just looking into space, even my forum posts got few and far between. I knew I had to do something radical to stop being snatched from this mortal plane.

In the years following my fall, I had the luxury of time to experiment with what treatments worked on a ‘try one at a time’ basis. Now I no longer had that luxury, so, even though I started off with good intention, following one treatment protocol at a time, I ended up doing three simultaneously, those were:

The Driscoll Protocol – Diamox, Zantac, Zyrtek (actually cetirizine but I’m assured it’s the same)
Dr Myhill’s Protocol – specific Vitamin & Mineral Supplements, Stone-age Diet, Increased Sleep
The Perrin Technique – Incorporating Lymphatic Drainage, some Supplements and Osteopathic Manipulation

The Driscoll Protocol (once I could convince my doctors to put me on it) was fairly easy to include and follow. I have to admit though, that I didn’t manage to carry out the full Myhill or Perrin protocols but, I did manage to include much of it.

The trouble is, now I’m not sure exactly what has brought about all of the changes – but there have been many! I can link some but not all.

The easiest measure is my performance on my recumbent bike which, considering I could only pedal for 30 seconds (before the ‘lactic acid’ pain set in my calves) when I started this forum post 15 months ago – today I managed 17 minutes, without stopping – I was amazed and stunned and SOOO appreciative of the improvement. I just felt I needed to tell everyone!
Regards
Barbara
(UK)

[Dr. Diana]

Well, I love to hear about folks who are improving! Yay! Keep it up, Barb! “Whatever works”, right? BTW, the Driscoll Theory protocol is changing soon! We absolutely still need Diamox, but after a few months of Zyrtec/Zantac, my kids and I were able to go down on the antihistamines! I no longer believe that mast cell activation syndrome is a huge part of our problem — more of a red herring, but it needs to be treated. So you’re not on Chromolyn or Ketotifen? Those can help, and I wonder how much of our decreased need for antihistamines is due to those medications… Hmmm… I hope to be able to bring answers for our continued symptoms, even after antihistamines . Big hug…

[Dr. Diana]

My genetic doctor told me, in a non-insulting ‘duh’ sort of way that chronic fatigue is part of EDS.

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?!

GiveMyDaughtertheShot, You describe our fatigue well. Do you also run out of whatever you need to think? I told my neurologist that I was running out of something, what could it be? I told my husband that with this type of “fatigue”, if the house were on fire, I wouldn’t be able to move — it would have just burn around me. I just made the last (I hope) tweak to an over-the-counter medication that should correct this (unless there is hidden cancer or something the doctors missed). I will announce it soon, OK? I wanted to be VERY sure I hit everything (genetic defects, propensity for autoimmune problems) and then I needed to be certain we didn’t develop a tolerance for it, and I needed to be sure it kept working! Yes! I ran a small trial in order to get the patent (and to be sure it wasn’t just my kids and I who responded). This is something you won’t need to ask your doctors for! YAY! Give me about 2 months and I’ll get it out, OK? Hopefully, it will be about the same time the info about Diamox gets out. Then we’ll have more control about these aspects of our illness and won’t need to work so hard to explain it… Good grief. POWER TO THE PEOPLE! ha. More layers to come, but these first two are a HUGE step! 😉

[Barbara]

Last month I underwent an Adrenal Stress Test. The test was fairly easy, it was simply collecting saliva into 4 little test tubes and sending them off. Has anyone else had this done ?

The results showed that my cortisol was too high in the morning (I think probably caused by all the pain, discomfort, frequent wakenings, etc because cortisol is a response to stress!). For the rest of the day and evening, my cortisol was low-normal. I’ve said all along, that something happens to me overnight, that makes me feel dreadful on a morning, like a really bad hangover – but I don’t drink alcohol (in fact I’m intolerant of alcohol). When I’ve had my blood checked after a bad night, the liver enzymes are raised above normal but I don’t know why.

The DHEA was quite a curious result, it was below the normal range. I did a bit of reading on different websites and concluded that a low result:
Can be a sign of pituitary trouble (think ’empty sella’, or ‘partially empty sella’, a condition that many of us have that goes undiagnosed)
Is involved in POTS,
Is also involved in poor wound healing
Can contribute to poor memory
Can manifest in Parkinsonian symptoms (i.e. muscle stiffness, when initiating movement)

I have heard from someone who took DHEA, who also said it raised their sex drive. One study of the DHEA literature involved dosing men and women between ages 40 and 70 for three months compared to placebo. Over 80 percent of the men and two thirds of the women on DHEA reported increased energy, better sleep, better moods and were more relaxed in stressful conditions.

Hmm, I wonder how many more of you might have abnormally low DHEA ?
Barbara
(UK)

[Dr. Diana]

Last month I underwent an Adrenal Stress Test. The test was fairly easy, it was simply collecting saliva into 4 little test tubes and sending them off. Has anyone else had this done ?

The DHEA was quite a curious result, it was below the normal range. I did a bit of reading on different websites and concluded that a low result:
Can be a sign of pituitary trouble (think ’empty sella’, or ‘partially empty sella’, a condition that many of us have that goes undiagnosed)
Is involved in POTS,
Is also involved in poor wound healing
Can contribute to poor memory

Hi Barb, I have low cortisol, low DHEA, ACTH, and low free testosterone. I had further testing to see if the problem was located in my pituitary or higher up, in my hypothalamus. My pituitary responded to stimulation, but just barely. It looks more like hypothalamic dysfunction among, other possibilities. A stimulation test is important to know if your pituitary is to blame. I do take DHEA, as it is over-the-counter here in the states. Men need to be careful, however, because there is a feedback loop where if they supplement with too much DHEA their bodies can stop producing a normal amount. Honestly, I haven’t noticed any differences on DHEA but continue to supplement knowing that my levels are low. That is fascinating how your liver enzymes are abnormal after a bad night. Has anyone else noticed that?

[Barbara]

Hi Diana,
As you mention the liver enzyme tests, these were the ones that were abnormal:
* ESR – persistently above normal range – average test result of 18, when the normal range is 1 – 14
(number of tests taken is 17 tests) it’s a sign of increased inflammation, or anemia
* Alanine Transaminase – above normal 5 times, out of 19 tests often when I’ve had a ‘bad night’
* Alk. Phosphotase – above normal 3 times, out of 22 tests, all 3 when the above was abnormal
* C-Reactive Protein – above normal on all 5 tests, taken since my accident
(according to Medline – C-reactive protein is produced by the liver. The level of CRP rises when there is inflammation throughout the body.)

As I said, I don’t drink alcohol because I’m intolerant (it makes me feel more ill!)

I was watching a video of the lady who promoted the CCSVI, venous insufficiency and MS link in Canada, the other day and she had noticed that her husband had abnormal liver results too.

Regards
Barbara
(UK)

[Dr. Diana]

This is really tough, Barb! I used to love wine with dinner and had to give it up, also. 🙁 It’s my hunch that it causes enough vasodilation to make it not worth it! I threw caution to the wind one evening, though, and had two drinks one evening. They were espresso based, so I thought the caffeine would off-set the vasodilation and I would be OK. The next day I had nystagmus in the morning! I knew then that alcohol was doing more than just dilating my already defunct vessels! Yikes. I watched the video and am VERY familiar with our endothelial research. Absolutely, more research needs to be done about our vasculature. After I had the procedure discussed in the video, I had no improvement, but I did develop a huge thrombosis (blood clot) in that vessel. I was put on Heparin and developed osteoporesis from Heparin. My gut is telling me that folks with connective tissue disorders and weak vessels are prone to vessel and endothelial damage from many things — including this procedure, but we are also prone to blockages of the veins (due to thrombosis and other causes) making this a very “catch 22” situation. I know some doctors who are working on a procedure to try to break through venous clots, but they have not moved beyond a patent yet. So today, we work on vessel health, blood thinning as needed and prevention of fibrosis when appropriate. Do you know if the vessels leading to your liver are OK? Makes you wonder, doesn’t it? 😉

[Dr. Diana]

Please go to “The Chronic Fatigue Element – Part 2”. 😉

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