chilove
Senior Member
- Messages
- 365
Hi Madie,
Please tell me more about the potassium meter.. thats cool!
Thanks!
Audrey
Please tell me more about the potassium meter.. thats cool!
Thanks!
Audrey
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Hi, Snow,
I'm glad you pulled through this OK. I'm now thinking of keeping a card in my wallet stating that due to medications, I'm prone to low potassium. Because if I get hit by a car and am far from my supplements for however long, that's the issue that could hurt me.
My potassium meter came in today's mail. I'm now doubly glad I sprang for it.
Madie
Fred,
Thanks for the reply. I know that it's all a complex puzzle. Just thought I would ask in case you'd encountered the swollen glands thing in connection to anything in particular. I get that a lot, but it was particularly distinct and particularly bad with the methylation start-up. I've been on the full protocol (including 5000 - 10000 methyl B12, and one Dibencozide daily). Wasn't taking any glutathione, whey, etc. just in case I was one of that group. Wasn't taking any folic acid, for similar reasons. When I started to get really sick, I decided to put the methylfolate on hold for a while and tackle other things in my program, as I didn't want to build up any bad momentum (I think I got lulled into a false sense of security and increased my dose too quickly, so I wanted to try fresh). Consequently can't say if the symptoms would have passed on their own or not with time. Will give it another try again sometime. Didn't notice any problem with any of the B12's on their own (potassium dropped some, but that was pretty easily corrected as far as I can tell). Just the methylfolate, and previously the SAMe. At the time I started the SAMe, I knew nothing about methylation and wasn't yet diagnosed with ME, so just cut the dose down a lot and rode out the initial side effects and they passed with time.
Thanks again for the help. I didn't expect that you'd necessarily be able to pinpoint the problem for me. Just thought it was worth a try to see.
It was my daughters first birthday today so went to Bristol aquarium about an hour from our house. I forgot to take my tablets this morning before I left, including my 99mg of potassium. I figured it would be okay until evening when I usually take my second dose.
I WAS VERY WRONG!
On the way home about four o clock I was driving and started to get tingling in my stomach. Then my chest. I pulled into a layby. Then my arms and hands tingled, then my nose and then my face.
I tried to speak to my wife but my words came out slurred-I couldn't control my face muscles properly.
Then the pain started. In the backs of my shoulders. It got worse quickly. My wife phoned 999 (911 to my American cousins). By the time the ambulance arrived I was in a lot of pain, and I had twigged what the cause was-low potassium. We had a banana with us so I quickly ate it. I was hitting my head against the steering wheel because the pain was so bad. It was like cramp I have had after heavy exercise many years ago, but you couldn't stretch it out.
The paramedic gave me morphine and gas and air. It didn't help.
After a while the banana did, a bit. On arrival at hospital my pain had gone from 9/10 to 7 or 8/10. Over the next hour it dropped to 6. Much more bearable.
I explained what was happening and that I had ME. The doctor said he thought I had had a panic attack. I te him I didn't. He then told me that they didn't call it ME anymore, but CFS. I told him again that he was wrong. He wanted to discharge me.
I told him to run a potassium test first. Grudgingly he did "it will come back high" he told me.
Five minutes later he came back sheepish, it had come back low.
He took more blood to get a formal reading and to test some other stuff. Two hours later a much more pleasant doctor came in and apologised that they had lost my blood and needed to take more. Rather than wait so they would give me potassium I got her to take the blood then discharge me so I could go take some potassium. Got home took some and feel a lot better. Pain now 3/10. I get the eesults of my test tomorrow.
Conclusion: do not go anywhere without potassium and don't forget to take it. Even if on a relatively low dose like me and haven't had any significant low potassium symptoms before. It hits hard and sudden if you stop respecting it.
Just want to point out that CFS patients with potassium issues might use the word 'hypokalemia' in an emergency to communicate with emergency personnel. The ER certainly will know that is an emergency, as is the opposite, 'hyperkalemia,' too much potassium without enough balancing sodium. Probably those of us with this issue should wear emergency alert bracelets when we are out and about. Maybe someday. And if you have had a blood test with low potassium, you have historical evidence of being at risk for transient hypokalemia.
BTW, when I start getting low potassium symptoms, I also take a balanced mineral solution, getting the cal/mag up along with the sodium/potassium seems to help very quickly, sometimes within seconds the pain diminishes.
Hi, Snow.
I, too, am very sorry to hear about what happened to you.
This post will probably not make me very popular, but I again want to urge people that if they do not have to use high dosages of methyl B12 and methyl folate to experience improvement, as I understand Freddd and perhaps some others do have to, apparently because of their particular genetic issues, I think it would be far safer to use hydroxocobalamin and something closer to the folate RDA dosage of methylfolate. This will leave the cells in control of how fast they bring up the methylation cycle and the folate metabolism, and thus how fast the cells reproduce, and how large the demand for potassium will be. If it is necessary to use methyl B12 to experience improvement, then I think that the dosage should be limited to something like 2 milligrams per day, sublingual. It may take longer to get the improvement this way, but I think it will be safer. It would be a horrible tragedy for someone to die in trying to correct a partial block in their methylation cycle, and this does not need to happen.
When high-dose methyl B12 and methylfolate are used together, the normal control by the cells is overridden. The methylation cycle is overdriven, and the folates come up rapidly. This drives rapid synthesis of new DNA and RNA, and that speeds up the cell cycles for reproduction, producing a rapid and large demand for potassium. My opinion is that this is an unnecessary risk for most PWMEs, and that opinion is based on the experience in the clinical study that Dr. Nathan and I carried out.
Please be careful!
Best regards,
Rich
Snow you are very fortunate that you knew what to do and were able to do it in time. This is what scares me about this protocol. I am surprised that after such an experience you are continuing as before. I myself find that if I take those elevated doses of mfolate, it makes my potassium unstable, and I find that dangerous so that I am unwilling to take that high dose. I settle for the lower dose and don't have such issues. When you are out and about you cannot lay your hands on sufficient potassium at short notice and 99mg is nothing...I can't believe it was enough to get you by.
If your doctor did not lose the labs again and can see that you were low potassium, maybe you can get him/her to prescribe you some potassium pills in sufficient dosage to be safe that you could carry around with you. If so, your emergency visit might be very worthwhile in terms of preventing a worse incident in future.
Take care
Rydra
I switched to Rich's SMP which has a lower dose of b12 and in a different form for exactly this concern about potassium. I was reassured that there had been a clinical study on it in which the patients didn't run into potassium problems. The SMP didn't work for me at all so I've now switched to methylb12 but at SMP doses. I hope I'll see slow and steady improvement over weeks and months.
This post will probably not make me very popular, but I again want to urge people that if they do not have to use high dosages of methyl B12 and methyl folate to experience improvement, as I understand Freddd and perhaps some others do have to, apparently because of their particular genetic issues, I think it would be far safer to use hydroxocobalamin and something closer to the folate RDA dosage of methylfolate. This will leave the cells in control of how fast they bring up the methylation cycle and the folate metabolism, and thus how fast the cells reproduce, and how large the demand for potassium will be. If it is necessary to use methyl B12 to experience improvement, then I think that the dosage should be limited to something like 2 milligrams per day, sublingual. It may take longer to get the improvement this way, but I think it will be safer. It would be a horrible tragedy for someone to die in trying to correct a partial block in their methylation cycle, and this does not need to happen.
When high-dose methyl B12 and methylfolate are used together, the normal control by the cells is overridden. The methylation cycle is overdriven, and the folates come up rapidly. This drives rapid synthesis of new DNA and RNA, and that speeds up the cell cycles for reproduction, producing a rapid and large demand for potassium. My opinion is that this is an unnecessary risk for most PWMEs, and that opinion is based on the experience in the clinical study that Dr. Nathan and I carried out.
Please be careful!
Best regards,
Rich
I think Rich makes some very good points and i wouldnt necesarily reccomend the more potent protocol as a first outing, or even at all necesarily. I started on Rich's simplified version and quickly had benefit, which proved to me that this methylation stuff really is relevant and the treatment beneficial.
That was what convinced me to learn more about it and move to the more potent version. This version is probably more risky because of the strength and amount of what you are taking, meaning that you shoot through your potassium far quicker than is the norm. But that is because your body is using the potassium for repair, and ultimately you want that in order to hopefully get better.
Whichever protocol you chose I would recomend reading up on it first and at least understanding at a high level, how it works, and what risks that brings.
For me, the potential benefit of the more potent protocol balanced against the increased risks makes it worthwhile for me, personally. But its an individual choice, and i see the risk as being entirely my own.
I wouldn't want my experience a couple of days ago to put anyone off - it hasnt me - but anyone reading it should realise that this more potent protocol, is not comparable to taking a few vitamin c tablets for example. Its more complicated and has more risk. Having benefited from these treatments (both protocols) I just wish that people do try at least one of the protocols, whichever one, because its the only thing that has made me more well.
Hi, Snow.
I, too, am very sorry to hear about what happened to you.
This post will probably not make me very popular, but I again want to urge people that if they do not have to use high dosages of methyl B12 and methyl folate to experience improvement, as I understand Freddd and perhaps some others do have to, apparently because of their particular genetic issues, I think it would be far safer to use hydroxocobalamin and something closer to the folate RDA dosage of methylfolate. This will leave the cells in control of how fast they bring up the methylation cycle and the folate metabolism, and thus how fast the cells reproduce, and how large the demand for potassium will be. If it is necessary to use methyl B12 to experience improvement, then I think that the dosage should be limited to something like 2 milligrams per day, sublingual. It may take longer to get the improvement this way, but I think it will be safer. It would be a horrible tragedy for someone to die in trying to correct a partial block in their methylation cycle, and this does not need to happen.
When high-dose methyl B12 and methylfolate are used together, the normal control by the cells is overridden. The methylation cycle is overdriven, and the folates come up rapidly. This drives rapid synthesis of new DNA and RNA, and that speeds up the cell cycles for reproduction, producing a rapid and large demand for potassium. My opinion is that this is an unnecessary risk for most PWMEs, and that opinion is based on the experience in the clinical study that Dr. Nathan and I carried out.
Please be careful!
Best regards,
Rich
This is an agricultural product. It measures potassium in a solution (which saliva is) in parts per million. Do you know of anyone who is using it for a person or are you being a pioneer? Have you used it on yourself yet? If so, what readings are you getting? Be sure to keep us informed of all you find out (perhaps in another thread, as previously suggested).I bought the Horiba (http://www.amazon.com/Horiba-Cardy-Potassium-Meter-C-131/dp/B006O12HS2/ref=pd_sbs_indust_1). It uses a bit of saliva.
Thanks for your post, Rich.When high-dose methyl B12 and methylfolate are used together, the normal control by the cells is overridden. The methylation cycle is overdriven, and the folates come up rapidly. This drives rapid synthesis of new DNA and RNA, and that speeds up the cell cycles for reproduction, producing a rapid and large demand for potassium. My opinion is that this is an unnecessary risk for most PWMEs, and that opinion is based on the experience in the clinical study that Dr. Nathan and I carried out.
Please be careful!
Best regards,
Rich
I got my results from the second test, it was low but in range at 3.9. But then it was after a banana which I think someone mentioned probably had about 500mg in it which is five times my tablet dose. So I guess I must have been well below normal when it all started. I do wish it was all a little more certain but it seems that it works differently in each of us how much of everything we need etc.