Discussion in 'Latest ME/CFS Research' started by Snow Leopard, Jul 10, 2016.
Which SNP? There's a lot of them on the gene he's discussing, and most won't have any impact.
Did you read the letter? I am not sure, that is all the information he provided me unfortunately.
It doesn't list any specific SNP or mutation.
All I see is the letter, and not the paper @Chelby
But if it's been "accepted for publication" but not published yet, you shouldn't post it publicly!
The paper is the one posted in this thread. "Widespread pain and altered renal function in ME/CFS pts". This was before the paper was published .
Do you know if Dr Davis or anyone on his team (you?) have read this report and if would be useful to any of us suffering with severe ME
I've read it (quickly!) but haven't data-mined it the way I have other studies, so I can't speak to what's here, yet.
Posts on Neil McGregor's presentation at Open Medicine Foundation's Community Symposium have been moved to this thread,
Neil McGregor’s presentation at Open Medicine Foundation’s Community Symposium
I know this post is old, but I'm glad to hear this symptom went away for you! It's one of my most debilitating issues during crashes. It causes tachycardia, extreme flank pain, sometimes pelvic/abdominal pain, and insomnia that no med can seem to work for. I assume it's because my electrolytes are being thrown completely off, but in all honestythat's just a guess It only lasts 2-3 days, but it's happening once or twice a month now, and has been since last May. I increase my salt/potassium intake, and drink Pedialyte to try and retain fluid, but nothing seems to work very well at this point so I just ride it out. Did anything in particular help with this symptom when it was an issue for you? Did you notice triggers? Man, I really hope this eases up a bit eventually...fingers crossed.
I had a similar set of symptoms a while back. Turns out I was short in calcium. Upping calcium intake resolved the symptoms.
Was it through trial and error that you realized it was calcium or did you have a test run to identify the need for it ? I do get nauseated at times too with it which makes me thing potassium, but I'm always scared to take large amounts of anything in regard to electrolytes...I know I need to get over this, but they are so touchy and I'm not nearly as educated on all of this as you guys are so I'm scared to jack myself up even further...
Awags I have no answer to your central question.
but I have found that taking a little bit often seems to work better than taking a lot in one go, So I mix about half a teaspoon of salt, a little less than half a teaspoon of potassium and a pinch (maybe a sixteenth ... not sure) of MgSO4 into every litre of tea that I make.
(It is summer here, and I drink about 6 litres of chilled brewed tea (camelia and herbal) each day.)
I have found WHO Oral Rehydration Solution to be more effective. It is 3.5g salt, 1.5g potassium chloride, 2.5g bicarbonate of Soda (NaHCO3) and 20g glucose disolved in 1 litre of water. But I am not happy with all of that glucose. It works with PoTS but makes me feel ill.
I have experimented with another mix using amino acids in place of glucose.
(The sodium and glucose in normal ORS make use of sodium glucose synporters, the mino acids and sodium in my AORS make use of sodium dependent amino acid transporters.)
The mix I use is 12.5g aminos + 3.5g salt, 2g bicarb, 2.25g potassium chloride. One would ideally change the weight of amino acids depending on which ones you were using so that you had as many aminos as sodium ions. But this seems to work for me with EAAs.
(Or rather I found that it worked really well for PoTS and got me through Christmas. It also seemed to give me more energy. But I found that after a couple of months I was reacting badly to the idea of protein. I had a look at my DNA and some old pathology and noticed that I seem to be bad at converting phenylalanine into tyrosine.
So I saw my doctor and am geting some pathology done to check it out, and when I know what is going on I will probably give it another go with a mixture that does not contain phenylalanine.)
I reported my symptoms to my doctor and he immediately sent me to a lab to have all my electrolytes tested. I had the extreme thirst, urgent and frequent need to urinate, mysterious leg cramping and angina.
My calcium was below the normal range.
He told me to drink coconut water and take calcium and I improved within a few days.
I also drank lots of coconut water -- it was like nectar of the gods. I felt totally renewed afterwards. Can't say if that helped with the diabetes-type symptoms, though; those were so sporadic, happening once or twice a month for two months, and then more often the next month, and then once the next month... and then never again.
After awhile, though, the coconut water was too sugary for my body to process. Just keep paying attention to the messages your body is sending you, and shift what you're doing in tandem.
@Richard7 @Learner1 @JaimeS Thank you all so much for the input. I am going to go forward being more consitent with my electrolyte drinks. I must admit I only drank then when I felt a crash coming on, and realize I would benefit from drinking them daily, regardless of current lack of symptoms. I'm my own worst enemy...I swear :/
After a few years of being ill, I noticed that water ran right through me. I hesitated to drink any water after noon, as I knew that would cause me to get up at least twice during the night. This persisted for many years until I started taking resistant starches and supplemental probiotics.
Now I can drink water all day and don't ever get up at night to pee. I have no idea of why the change, but there were some serious "outgassing" problems after I started the potato starch. After a month or so, things calmed down and I could go out in public without embarrassment once again.
Once the potato starch cleared things out, I haven't needed to take it. I occasionally take a probiotic, but I do it mostly out of habit and don't notice the difference if I stop for a while.
I have no idea if this will work for others, but resistant starches were one of the cheapest and most effective things that I have tried.
I've heard this mentioned before, and will be adding some to my next supplement order. Those are essentially prebiotics, right? Do you have a guess as to why that helped with polyuria?
Careful with prebiotics and probiotics in this disease. Take it when you have time to sit quietly and process symptoms. There was only one probiotic that helped me (Dr Ohhira's) and all others made me sicker. Couldn't do starches at all -- of any kind -- until this past year.
The trial and error aspect of this disease is maddening! It's shocking how strongly we can react to things, and how each one of us is so very different. What reaction did you have to the pre/pro biotics that didn't agree with you?
There is a very long thread about resistant starches on this site. The resistant starches are thoroughly described there. See "The resistant starch challenge: Is this the key we have been looking for?" Be forewarned that it is a long one, 180 pages to date.
@JaimeS I agree that it is important to start slowly. The rotten egg smelling gas created in the early stages can be pretty uncontrollable. I took my grandson, who was three at the time, to a store. Some gas uncontrollable escaped and he looked at me and said real loudly "I smell poop". I didn't go back to that store for a while.
I also have had mixed results with probiotics. I was never able to get the results I wanted from any one type. I have the best results taking them spaced a few days apart and varying the types on a regular basis. There is a lot of conversation about probiotics on this site, and most of it doesn't work for me. It really is a matter of trial and error to find what works for each individual.
You can also try a Google Site Search
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