Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by suzi123, Feb 15, 2013.
Has anyone had them ? I desdprately want them so I can try and get supplements for energy
Me again,now i know your british can say they probably wontdo a test. What it is,is that mitrochondria make energy this is called atp. This is found to be low in all of these condictions,again they dont know if its cause or affect. Ask gp because i dont know what other meds you're on but as far as im aware the supplements you mention should be oked by him and then you can send of for the things your self, theres lots of websites like this one then a familar health food shop to us. Not sure if they stock d ribose but you can get it online i know cos i did. It may be expensive. The d ribose is the dearest.
You can add D-ribose if you want to, it has been found to help some people with FM. However its impact in the mitochondrial protocol is minimal for most people and considering its cost it is better to start on the standard protocol which is large enough as it is.
You don't need to have mitochondrial function tests, which are hugely expensive due to the many tests which must be carried out and in the case of ME/CFS the tests will show poor ATP synthesis, glutathione depletion, B12 and B6 deficiency as well as CoQ10 and carnitine deficiency. If you get the complete test then it would show outer membrane depolarization which means that your mitochondria will neither produce adequate ATP or process ROS properly.
There has been one small study treating FM as a mitochondrial disease with some success.
You could check out the mitochondrial disease centers but they are not interested in ME, except for Sarah Myhill in England.
If you read my post above and delve into the work of Chazotte and Myhill you will see that the protocol is basically a standard one. If you believe you may be overly sensitive to some of the items then start slowly, in two stages:
B12 sublingual 1mg twice daily
methyl folate or methyl-tetrahydrofolate 800mcg twice daily
B6 50mg twice daily
Acetyl-carnitine 500mg twice daily
CoQ10 (ubiquinol or ubiquinone) 100mg to 200mg
If you carry a lot of weight then you should start on vitamin D3 5000IU daily
Do this stage for one month then add stage two :
N-acetyl cysteine 200mg twice daily OR glutathione sublingual twice daily
magnesium citrate (or other form)200mg twice daily
vitamin P 10 mg daily
niacin (slow release)
You could add creatine which helps muscle function, something which Myhill recommends but which I have found is marginal for most people here.
If you do not have kidney disease then add potassium citrate 99mg twice daily. This will help to alkalinize your muscles and blood.
It sounds like a lot but you can cut down the load by opening the capsules and mixing the contents then take on a large teaspoon with water. This is what I did because I have a sensitive stomach. I also recommend this to people here.
[This Message was Edited on 02/15/2013]
Ian's suggestions are excellent. I just wanted to add that NADH is helpful also.
I agree with most of Ian's suggestions - they're excellent.
However, I think he is wrong about d-ribose. It has helped many people a lot with energy. Unfortunatley, it is pricey. But when I first started taking it several years ago, my energy got quite a boost. I found the best price was buying the bulk size, instead of capsules.
Also, re potassium - he's right about potassium citrate not being good for the kidneys. I found it exacerbated a bladder infection and may even have helped cause it. But I tolerate potassium gluconate just fine, and need to supplement with this as my potassium levels are low. And low potassium can cause severe fatigue. It was too hard getting enough potassium in my food. Foods that are generally high in potassium are very often high in sugar or carbs.
I've read that we actually need to be active in order to have normal potassium levels, and taht inactivity causes a deficiency. I forget how this worked but it makes perfect sense. I think low potassium is rarely looked at here - my levels were in the "normal" range, but at the bottom. ANd energy picked up when added it in and now take 400 mg. a day. Also, if you start taking methyl folate, you quite likely will need to take potassium additionally as the methy folate can cause potassium depletion as the cells start to heal. This was very true in my case.
Suzi - Dr. Sarah Myhill's office in the UK does these tests. I had them done (even though I'm in the U.S., had to send stuff overnight, quite expensive).
Anyways, they showed pretty much what Ian says they would show.
You should check out Sarah Myhill's site - she has excellent info re CFS and supplements and diet for it: http://www.drmyhill.co.uk/
...you said " NAC OR glutathione"... Is taking both a problem?
I've just recently started on NAC (500 mg/once daily) but I've continued to take the L-glutathione (capsule form 250mg/twice daily) and have been going downhill physically...
It may just be a coincidence, but I know that too much of one thing can cancel out other vital things that are important to our improvement. I also noticed that I may be taking some of my other supps in the wrong amounts (based on what you shared here)... Too much of some and not enough of others... I prob need to list what I take and in what amounts... As I said, my condition has really been deteriorating and I am getting very discouraged... So I appreciate any help you can give.
Also, I've been on the 5-MTHF (folate) 1 mg for a while now.... Just take it once a day, but wonder if that is too much now? I haven't been on potassium, but in view of what Mary shared, it sound like that is something I may need to add.
Also, I may need to add the NADH that Michele mentioned. I feel like you are all much more knowledgable about all this than I am. I'm so weak and exhausted that I can barely think straight... Just so fed up with my condition right now... My brain doesn't seem to be working so good lately either...
Thanks for your help...
[This Message was Edited on 02/21/2013]
[This Message was Edited on 02/21/2013]
Firstly In what way are you getting worse?
why do you think you are getting worse?
These are the most likely reasons why someone with ME/CFS will worsen:
change in climatic conditions
change in physical activity
Don't add anything new.
What I generally advise people to do, aside from dealing with the above is to go off all supplements for one week and see how you feel in terms of the worsening symptoms. Do any of them improve? It is unlikely that going off the supplements will make you worse over the short term. Most of them are not a daily requirement. In addition, supplements like drugs can interact with one another to cause symptoms to worsen.
Then add them back in order of short term importance and whether pain or energy is the priority and whether you know about your response to toxins. For example many people get elevated pain or increased fatigue in response to toxin exposures. (and stresses of course).
first add B12, B6, magnesium etc. whatever you have taken before.
As far as NAC or glutathione is concerned, my experience goes with NAC if you tolerate it. Basically we do not get glutathione in our diet, we make it. The oral glutathione will be doing very little because it cannot get through your upper digestive tract. It is a peptide (ie a two amino acid protein) and peptides cannot get through intact.
However the new sublingual glutathione is effective. I am currently taking both glutathione sublingual and NAC without any problem.
If you don't mind publish a list of all the supps and drugs you are taking with their doses.
[This Message was Edited on 02/22/2013]
I strongly urge you to read some of Freddd's posts on Phoenix Rising about the very real increased need for potassium when upping one's folate. See http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/ - and you can do a search for potassium on that board.
richvank added a cautionary note about the potential for depleted potassium on his last version of the methylation protocol.
When I first started taking methylfolate almost 3 years ago, my energy increased markedly in just 2 days or so, and then about day 3 or maybe 4, I hit a brick wall, very tired and very lethargic, felt like crap. And it took me a day or 2 to remember Freddd's warning about low potassium. So I started taking potassium, titrating up to 1,000 mg. a day for about a week or so, and sure enough, within a couple of days that horrible fatigue went away. If I hadn't known about the connection between low potassium and the methylation protocol, I would have had to stop the protocol because I felt so bad.
It's very hard to get too much potassium. RDA is estimated to be 3500 to 4500 mg. a day (there is dispute about this). I've been taking 400 mg. a day now for a couple of years, which is only 10% of the rda. My potassium which was at the bottom of the normal range, is now low-normal, a couple of points higher than it was, though could be higher.
Ian, I tried responding earlier on my smartphone, but as I was finishing, an incoming call wiped out my message and I didn't have strength to redo it...
I will list my supps in a separate post in a little bit... Thank you for your response...
To answer your questions, "How worse?" and "Why?":
I have been getting weaker and weaker... Difficult to even sit up or get to the. Bathroom... Feel on the verge of collapse when upright... Also, other symptoms are worse too, like nausea and neurological symptoms... And my brain feels like its barely working... No energy to even speak... Breathing is a chore... Thinking is a chore... Typing this is def a challenge...
I have been under considerable stress with my dad's life-threatening illness... Was doing tons of research to try to help him at one point... The emotion of my youngest daughter's recent engagement and pushing to be at her surprise engagement gathering last Friday surely hasn't helped matters, I guess...
Also, been dealing with respiratory symptoms like severe sore throat and cough... Thought I was finally over it and could get off taking NyQuil every night... But it returned last night so I had to get back on NyQuil... And although it helps with the mucus and cough and helps me sleep, I'm sure the chemicals in it are not helping my condition... In addition to the ME/CFS and fibromyalgia, I have MCS as well...
Also, toxic exposure could be a problem... When we have a north wind, which we've had a lot of lately, the landfill that's less than 5 miles directly north of me and the factories that are only about 10 miles north of me blow their toxins this way...
I haven't even been able to eat much lately because I've been too weak to take care of myself... It's 2 p.m. here and I haven't been able to eat anything yet... So I will try to grab a banana and will need to rest before listing my supplements... Have to find my list first...
Thanks again, Ian, for your help... And Mary, I really appreciate you sharing with me about the potassium... Could very well be part of my problem... Need to look into that... Thanks again...
... should I start with? The only potassium I really get in my diet is from 1 banana a day, which I think only has around 400 mg of potassium... I'm really beginning to think this is part of my problem...
But not sure how much I should take in a supplement... You said you started with around 1000 mg and then wound up on 400 mg per day...
Any suggestions? I feel like I'm fading away right now...
Thanks so much, Mary...
I just saw this post. I didn't start wtih 1,000 mg. a day - I titrated, or worked up to that dose, taking I think 2 tablets, waiting a couple of hours to see how I felt, then maybe a couple more. I continued to increase up to 1,000 mg. a day over a couple of days until my symptoms resolved. This was a couple of years ago. I think I stayed at 1,000 mg. (in divided doses) for maybe a week or even less, and then gradually cut back, and have been on 400 mg. a day ever since (with my doctor's blessing). And I have not experienced those horrible symptoms of low potassium since that time.
I saw your other post where you're feeling better. It's interesting that you were hospitalized once with low potassium. I think this is so overlooked! But very glad to hear you're feeling better -
Separate names with a comma.