CFS is a metabolic condition!

[Mij]

Wow, that video from Dr. Klimas sounds like a sales pitch. It reminds me of a doctor who took me for a lot of money back at the beginning of this nightmare. He claimed to have cured himself from fibromyalgia and now had the sacred cure only he could provide.

Vitamin D3 seems to be involved in ME and a lot of neurological conditions. I take 50,000 weekly per prescription, but am still below normal. Never heard of taking 50,000 a day. Definitely need a doctor to follow you on that amount. On the other hand, I would be curious if a larger dosage would finally raise my level and if that would actually ease the ME. I always thought I am just not absorbing the vitamin D properly. Would be an interesting experiment.

You might be magnesium deficient. I was very deficient many yrs ago and once I got my levels up, my vitamin D levels improved with supplementation. It's also possible that vitamin D deficiency may be the result of illness and not the cause.

http://www.ncbi.nlm.nih.gov/pubmed/23981518

https://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/

 

[Aidan Walsh]

@Aidan Walsh how often do you get your vitamin D levels tested on high doses?

Every couple of months they will test them now avoiding dairy is the key, on magnesium it is part of the protocol plus multi vitamins/minerals b complex...post above about D deficiency result of illness? 'it could be the actual cause of illness' we know the link to hormones in cfs is very very strong so this could be the key blesses Merry Christmas to all of you here be well soon

 

[Mij]

Hi @Aidan Walsh I have been watching these studies to see what results they produce.

''Inflammation is behind things such as infections and that might actually reduce vitamin D levels.'' "A deficiency, he said, could be a marker for illness rather than an illness being caused by a lack of vitamin D"

http://www.smh.com.au/world/vitamin-d-research-takes-edge-off-cureall-claims-20140103-309k2.html

 

[Aidan Walsh]

Hi @Aidan Walsh I have been watching these studies to see what results they produce.

''Inflammation is behind things such as infections and that might actually reduce vitamin D levels.'' "A deficiency, he said, could be a marker for illness rather than an illness being caused by a lack of vitamin D"

http://www.smh.com.au/world/vitamin-d-research-takes-edge-off-cureall-claims-20140103-309k2.html

I am happy you attached the link above first of all the doses they spoke of were probably not what Dr.Coimbra uses plus we all have to understand that Vitamin D3 could be a threat to the pharma industry as a whole so when I see papers like this it turns lights on immediately plus he uses the terminology 'partial'

 

[Mij]

@Aidan Walsh I understand what you are saying re pharm industry. I could not tolerate more than 2000iu vitamin D, my immune system felt as though it was on overdrive all the time. When I decreased the dose I was ok again. If it's working for you and you're under a doctors care then that's good. thanks for all your info.

 

[knackers323]

every couple of months but I do not really worry about vitD levels much I look at calcium bloods or if you can urine 24 calcium blood is easier plus parathyroid/parathormone levels my D level recently 640 my calcium I think was2:31 true 2:29 parahormone was 3.3 range done is 1.8 to 6.8 so 3.3 was good you must have your Doctor follow you ok plus if you have thyroid issues make sure its treated first prior to high dose D3 I feel much better but know it is a slow long process it won't happen over night plus dairy must seriously be dropped entirely no calcium supplements either get you calcium from foods vegs/fruits etc I have had a touch of pneumonia so I cut back for now until I clear this up water in my ears led to all this after not D3 I know a guy on Facebook his name is Malc Dilley he 'had' progressive Multiple Sclerosis he is recovered now on daily maintenance dose for life 20,000 he had to max out dose to get rid of illness up to 80,000 for over several months then reduced that might me my maximum dose as well it's based on 1kg body weight x 1,000 i.u. so if you are 50 kg 50,000 is your max 'Remember' Calcium can kill you so avoid 'dairy' over 10,000 daily D3 plus you need a Doctor to monitor you as well they do not use term Cure they use 'treatment for life' Partial vitamin d deficiency it is ok like once a week have a bit of cheese but no more once is a while I will eat some Edem Cheese that has Vitamin K2 in it...Vitamin D3 is actually a Master Hormone the brand I buy online is called Healthy Origins ebay or amazon should have it or online health stores I buy the 10.000 i.u. ones gel form 360 in each bottle ok bye p.s. In te new year I will test privately for histamine intolerance plus a paper recently published on phyciatrist hhv-6 'antiviral' I think post is on here somewhere from Cort I just had thyroid T4 good TSH Thyroid ok but looking into T3 but doubt it its off some say T3 is our problem but not sure 'Google T3 Dr. Skinner' who passed away recently pushed for T3 research but from what I read I do not see Marathon runners in this group if my T3 is off then let D3 fix its butt *2.5 litres of water daily to clear access calcium/hydration d3 will not work convert without omega 3 fish oils DHA/EPA in it a natural one I take 4x3,000 daily with foods all of these not empty stomache plus Japanese research says when you rise in the morning drink about litre of water prior to teeth cleaning waith one hour brush then eat Malc takes hus 20,000 at night before bed time Parkinson's Alzheimers I think they use only 10.000 i.u. D3 daily not more you can buy oil form d3 as well but gel is easier than drops

Hi mate why have you cut back on the vitamin D because you have pneumonia?

Wouldn't higher vit D levels be beneficial, boosting your immune system to fight it off ?

 

[Aidan Walsh]

So you don't watch or believe anything Dr.Klimas says and yet you have an opinion on her recommedations?

Here is a short preview for anyone who is interested.

Hi mate why have you cut back on the vitamin D because you have pneumonia?

Wouldn't higher vit D levels be beneficial, boosting your immune system to fight it off ?

* I stopped only for about 2 days I am back on 50,000 i.u. vitamin D3 if also on the protocol if you feel you need a break stop for a bit then continue my lungs are better but dry cough still some congestion but back on

 

[knackers323]

Thanks Aiden but I still don't understand the thinking behind it. The vitamin d would help you fight it off wouldn't it.? So why back off and let the levels drop?

Unless you thought you were getting herx symptoms from it.?

 

[MeSci]

@MeSci I also have a problem with Dr.Klimas's claim that we can't improve unless we "exercise". Exercise improves health in general but not ME. I agree. It makes severe and moderate sufferers feel like they are in a no win situation.


For those of us (me) who can do moderate exercise under careful circumstances it can improve some symptoms (achiness, stiffness, low mood etc) but by no means has it improved my ME. It just happens I started to improve over time and not fallen worse.

I also wanted to add that there are some of us who are improving somewhat but afraid to try moving more in fear of a relapse. Not everyone knows their HR thereshold or has a doctor who can monitor them.

What Klimas's patients may be benefiting from is knowing their anaerobic threshold and using a heart-rate monitor to stay below it. This may in time enable them to do more, because they are not harming themselves with anaerobic exercise.

 

[Aidan Walsh]

Thanks Aiden but I still don't understand the thinking behind it. The vitamin d would help you fight it off wouldn't it.? So why back off and let the levels drop?

Unless you thought you were getting herx symptoms from it.?

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

 

[Mij]

@MeSci the way the preview video is presented about exercise is a little misleading though, I have to say that. At the beginning they have a women lying on the couch who can barely speak, then we see her walking quite briskly, doing sit ups, squats wearing a HR monitor. 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.

 

[Nielk]

@MeSci the way the preview video is presented about exercise is a little misleading though, I have to say that. At the beginning they have a women lying on the couch who can barely speak, then we see her walking quite briskly, doing sit ups, squats wearing a HR monitor. 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.

This made me think: How they do know that it is the "lack of exercise" that is the cause of the worsening or the severity of the illness? Maybe, it is the severity that is the cause of the "lack of exercise"?

It is a falacy, in my opinion, to look at the more severe, who cannot exercise and say: If only they would exercise somewhat, they would not be as severe. Maybe, if we would exercise, we would be even more severe? I know that when I attempt to move around more and/or do more, I will always slide back. At times, I will crash for months. I know that more patients than not, have the same experience. Why will they not listen to the patients?

 

[lansbergen]

Why will they not listen to the patients?

Tunnelvision

 

[Unduki]

The one virus that has constantly popped up with me was HHV6 and I have taken 6 months of Valcyte, Valtrex and CoQ10 amongst many other things and have continued getting worse. I guess everyone reacts differently.

The other thing I'm competing with, though, is that I overexerted heavily in the beginning (I had no fatigue so I didn't know) and my damage done from those episodes seems to have made this illness more permanent and all treatments have been ineffective.

I got really sick at first and didn't see any sign of getting better for over a year. Dr. K said this was to be expected. This virus wants to live. It's a lot like quitting sugar when you have rampant Candida. Dr. encouraged me to keep at it as long as I could and if it got too bad, we could come back and try again. I'd been through severe Lyrica withdrawal, so I figured I could handle this.

I definitely agree with you that I'm magnesium deficient. I take a good supplement but if I can work in an Epsom salt bath at least once a week, I do much better.

 

[Mij]

@Unduki are you familiar with magnesium oil or gel? It's magnesium chloride and can be absorbed through the skin. It's much less time consuming and more convenient than running a bath. I feel it works just as well as taking magnesium injections.

 

[Unduki]

Thanks, Mij. I'll look into it.

 

[Mij]

This made me think: How they do know that it is the "lack of exercise" that is the cause of the worsening or the severity of the illness? Maybe, it is the severity that is the cause of the "lack of exercise"?

It is a falacy, in my opinion, to look at the more severe, who cannot exercise and say: If only they would exercise somewhat, they would not be as severe. Maybe, if we would exercise, we would be even more severe? I know that when I attempt to move around more and/or do more, I will always slide back. At times, I will crash for months. I know that more patients than not, have the same experience. Why will they not listen to the patients?

Well this is the thing that is confusing to me. A lack of movement/exercise for the general population can contribute to existing health conditions, heart conditons, diabetes, circulatory problems etc But I don't think this applies to ME. I am able to power walk and do some light weights if I get adequate rest and don't have appointments, grocery shopping etc to do the next few days. It's all a balance, but that's only because I've improved over the past few years- AND IT WASN'T BECAUSE I EXERCISED. it was the other way around, I rested rested rested and after THEN I improved. yeah they've got it all backwards!

 

[Valentijn]

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.

To some extent she is right - deconditioning is somewhat inevitable when we're bedbound or even couchbound. So it's nice to be able to avoid that if possible, but I think she's overestimating the ability of housebound patients to ever avoid deconditioning without sacrificing essential daily activities.

Some exercise-nut patients prefer that approach - they'd rather hire people to take care of household tasks so that they can do structured exercise instead. And some people have a specific goal like getting down a flight of stairs from their apartment without collapsing.

Personally I think both situations are rather ridiculous. The whole point of exercise is to build up muscles which you'll be using, and there's no sense in cutting out normal activities to build up muscles which are less essential. And ME patients should be able to get accommodated enough that we don't have to walk down stairs to get outside, with the added benefit of then needing less support inside the house due to not being crashed all the time just from getting in and out.

But that's the personal choice of some, and both some patients and some doctors have trouble putting exercise completely on the back-burner until someone is sufficiently recovered enough to handle it without there being a significant trade-off with daily functioning. Klimas might have a mild tendency in that direction, but it is strongly tempered by insisting on using heart rate to set an upper limit.

So while her approach requires constant warnings and clarifications, it's probably pretty harmless if pain, PEM, and other symptoms are also used to indicate that activities must cease. It's also easier for non-ME specialists to accept that sort of approach - NIH, CDC, and most mainstream doctors probably can't comprehend that exercise is flat-out harmful for us, but they could probably accept that exercise is possible within strict limitations which exclude most of us from doing it

 

[Unduki]

We can improve our health with exercise IF CFS/Fibro lets us. There are simply days when exercise makes the conditions worse. Anyone who claims otherwise isn't paying attention.

 

[Unduki]

Gingergrrl - I said relatively symptom free. It's still there, hanging like a shadow but I've been working out and feeling like I did before I got sick. I've gotten so strong. Enough that I think if I could beat these cluster headaches, I could finally go out and get a job - now that I'm nearing retirement...

Sick was constant nausea and dizziness. I always felt like I was coming down with something but it never really manifested - just lingered. I had pains - everywhere! Every joint, every muscle, even my hair!! has given me grief, most for no reason. The fatigue was simply horrid. I was in the middle of raising 4 kids when I got sick. My husband hung around for a few years, hoping I would get better, but when I didn't after 6-8 years, he took off and left me with the kids and no support. He says I'm a b#$ch. I suppose I was. It's really hard being so sick, ALL THE TIME, eh?
But, the worst thing of all was the foggy brain. You can't do much when your brain won't work, and I'm a hard core doer.

Oh, and every now and them, I got these subcutaneous infections - like a regional zit - extremely painful. Usually it was one cheek and the side of my head but once, my nose swelled up like Grocho Marx and another time, one of my ears blew up.

I also had a very bad back for 22 years that went away after I started hanging upside down on an inversion table about the same time I was taking the Valtrex. The backache is history... ugh! All those years and the solution was pretty simple.

I took other stuff - the list is long and you'd recognize most of it. I still take over 30 pills every day - only 3 are prescription - and heavily regulate my diet. Let your food be your medicine, etc... Stopping sugar was actually the hardest thing I've done but perhaps the most beneficial overall.

And I try to work out every day for about 30 minutes. That's when feeling awesome starts.