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methylation startup issues, maybe potassium, need advice

D

dece

Messages
11
Hi there,

This is my first post, but I have been reading this forum for several months now and didn't want to bother you guys with any questions, so after reading a lot in here, and discussing the protocol with my GP, I started the active methyl protocol last week (wednesday).

This went ok (not much effect) until 2 days ago, as of when i started to feel very tired (even more than usual), severe muscle fatigue/weakness, headaches, elevated blood pressure/heart rate..

From what i think to have learned here in several threads, especially the warning-low potassium thread and the detox-decision tree thread I guess these are low potassium symptoms? (group 1 + 2 symptoms as Freddd would say?)

The thing is: since starting to feel bad (3rd day now), I have upped and upped my potassium intake (both tablet and food), with no improvement, i'm getting weaker (muscles) and more faint/weak/dizzy in my head by the day..
the last 2 days i've been doing not much other then lying in bed/couch, i went to the store (20 minutes) today to buy some food, and actually feared of passing out near the end because of faintness.. so this issue is clearly not getting better after 2,5 days of upping potassium :(

btw: 2 days ago i started upping potassium to about 1500mg + food
yesterday potassium 3000mg supps + 2000 food (estimate)
today until now: 2500mg supps + 2000 food

so does this mean it is not potassium related
OR it is but it takes more time to replete levels to normal
OR something else which I am missing?

btw: i live in a country where me/cfs is seen by most docs as a 'psychosomatic' issue, and you need to 'learn and live with it'.. i have been lucky enough to find me a doc who wants to try stuff like valtrex, and even says 'ok, you can try the methylation/active b12 protocol, but be careful'..
yesterday-evening i was getting more and more worried and called him to ask whether my weakness/tiredness was potassium related, but he said:

- you would only get muscle weakness at very low potassiul levels, and you would have had heart arythmias on top of elevation of blood pressure/heart rate
- he also said: we can not measure potassium with normal bloodworks, takes em to long to get to lab and the results will get fubar
- only in hospital they can test adequately, but you should not go there without arythmeas (in hospital they are even more opposed to 'treating me/cfs as a real illness..)

anyways, my build up of supplements/vitamins went as follows:

  • 1 multi-b without b12 or folic/folinic, with active b6 (biocare b-plex)
  • 1 sublingual jarrow 5mg methylb12
  • 1 sublingual adenosylb12 every 3 days
  • 1 methylb12 1mg (enzymatic) every 2 days
  • 1 metafolin (0,800mcg)
  • 3-4 tablets omega3
  • some probiotics
  • 3 * 99mg potassium
  • 2-3 magnesium/calcium mix (solgar)
  • i had been taking a multi-mix on dr's advice for several months containing RDA amounts of vit a, c, e, selenium and zink + 100mg Q10)

as of day 3 i also included:
  • 500mg TMG
  • vit k (40g)
  • vit d (5000iu)

as of day 6 i read the warning: low potassium is dangerous-thread and:
upped potassium tablets to 5 - 99mg

day 7 i stopped taking the Q10-quatral mix and started taking separately:
  • vit a (10 000iu)
  • vit c (1gr, slow release)
  • vit e (22iu)
  • zinc (30mg)
  • selenium 200g)
  • 100mg Q10

I also have been taking:

  • valtrex 3 * 500mg / day for about 6 months (got sick with ME/CFS after an EBV infection, with continues gland pain in armpits and throat, which got better after a few months of valtrex, my energy and brainfog improved also a little bit, but only like 10% on good days..)
  • 1mg loprazolam for sleeping difficulties

so sorry for the length of this post, but i wanted to provide as much info..

also, thanks in advance for your opinion/advice on what the issue may be / what i need to do in order to relieve these new symptoms..

warm regards,

dece
 
D

dece

Messages
11
oh yeah, for the sake of being complete i almost forgot:

- prior to starting the methylation protocol, i used NAC (600mg / day) for about 3 months on dr's advice..
- i also experience some mental instabilities these last 3 days (feeling blue, a bit confused/worried asto what's going on and what to do, mentally vulnerable), these symptoms have appeared together with the severe muscle weakness, fatigue, feeling faint and some headaches, my eyes especially seem to feel more fatigued than usual, and near bedtime I can hardly focus to watch some tv.. also some nausea, and some diarhea (maybe because of lots of fruit juice last 2 days?)

- i stopped taking supplements/vitamins (except the potassium) since yesterday (don't want to make things worse)
- when i say intake potassium from food i mean: a few bananas, a small litre of orange juice, some tomato juice and some raisins/nuts (on top of regular food intake, which is normally quite low in potassium it seems)

thanks in advance for some advice as to what to do next..
 
R

richvank

Senior Member
Messages
2,732
Hi, dece.

Welcome!

It's difficult to say for sure without some lab tests, and I expect you might get a different opinion from Freddd, but my guess is that with the regimen you described (a fairly high dosage of methyl B12, twice the folate RDA level of methylfolate, and some TMG on top of them) your methylation cycle is being overdriven so that your glutathione has become further depleted.

You could try stopping the TMG and backing off some on the methyl B12 and folate. Since you apparently tolerated NAC O.K. in the past, you could try adding some of that back in to see if it will help by raising your glutathione.

I hope this helps. I would encourage you to keep working with your physician while on this treatment.

Best regards,

Rich
 
D

dece

Messages
11
Hi Rich,

Thanks for your (quick) reply! very much appreciated!

First of all, some extra info i just thought of which might be useful, my last bloodtest (end januari 2012) showed:

- normal b12: 414 ng/L (refs 191-663)
- low 'folic acid' serum: 4.2 mcg/L (refs 4.6 - 18.7)

regarding this low folic acid, doc subscribed me trib-vit (mixture of folic acid 0,8 mg, cyanocobalamine 0,5 mg, pyridoxinehydrochloride 3,0 mg.)
- low iron: 53 mcg % (with reference values 59-158), doc said eat some more meat..

so since end of januari i have been taking 1 tablet of this trib-vit a day (until last days when i started the active protocol) + the NAC (600mg) a day (powder soluble in water), without much difference when comparing to before januari (some overall improvement, but rather small (like 5-10% on a good day)..

Hope this might provide some additional info which can be useful for 'guessing what my problem could be'..?

As to your reply, ok, so if i understand correct, you guess that i have overdriven my methylation cycle with the supps i took, and this further depleted my glutathion..

If correct, taking NAC would make me feel better/less bad again.. any guestimate regarding ETA of symptom relief?
Any suggestion regarding dosage of nac?
EDIT: i have some reduced glutathion tablets here (never used them), would this be better/faster, or a bad idea?

Should i keep taking these rather high dosages of potassium, or are my symptoms not potassium related?

Also, regarding folate & methB12, should i stop taking them for a few days(or longer), or continue taking them but in a lower dose as you suggest?

Much obliged for your response, especially in times of 'crisis' and given the fact that doctors over here seem rather clueless regarding these things..

Warm regards,

dece
 
R

richvank

Senior Member
Messages
2,732
Hi Rich,

**Hi, dece.

Thanks for your (quick) reply! very much appreciated!

**You're welcome.

First of all, some extra info i just thought of which might be useful, my last bloodtest (end januari 2012) showed:

- normal b12: 414 ng/L (refs 191-663)
- low 'folic acid' serum: 4.2 mcg/L (refs 4.6 - 18.7)

regarding this low folic acid, doc subscribed me trib-vit (mixture of folic acid 0,8 mg, cyanocobalamine 0,5 mg, pyridoxinehydrochloride 3,0 mg.)
- low iron: 53 mcg % (with reference values 59-158), doc said eat some more meat..

so since end of januari i have been taking 1 tablet of this trib-vit a day (until last days when i started the active protocol) + the NAC (600mg) a day (powder soluble in water), without much difference when comparing to before januari (some overall improvement, but rather small (like 5-10% on a good day)..

**If you have ME/CFS, folic acid and cyanocobalamin are not the best forms of folate and B12, and taking B12 orally will not get enough into the blood to overcome the functional B12 deficiency. It has to be done sublingually or by injection to get enough in (probably transdermal or liposomal B12 would work, too, but I don't have experience with them). I would suggest discussing with your doctor the possibility of discontinuing them in favor of the forms of B12 and folate that you have added.

Hope this might provide some additional info which can be useful for 'guessing what my problem could be'..?

**The low serum folate would be a problem, but your new protocol should help that.

As to your reply, ok, so if i understand correct, you guess that i have overdriven my methylation cycle with the supps i took, and this further depleted my glutathion..

**That's my guess. I don't know if it's feasible for you to get some tests run. That would help. Otherwise, I can only give you my best guess, based on what you have reported.

If correct, taking NAC would make me feel better/less bad again..

**If it's low glutathione, yes, I think that would help.

any guestimate regarding ETA of symptom relief?

**Probably at least a few days, but I'm only guessing.

Any suggestion regarding dosage of nac?

**I would suggest starting at 600 mg per day, and if you tolerate that after a few days, you could double it, but I would not suggest going higher, because high doses can be pro-oxididant.

EDIT: i have some reduced glutathion tablets here (never used them), would this be better/faster, or a bad idea?

**They would probably be as good as the NAC, and maybe a little better, because they would supply glycine, too, which is sometimes low. Most of the glutathione will be broken down in the gut into its amino acids, but some of them will be transported to the liver, which can use them to re-form glutathione.

Should i keep taking these rather high dosages of potassium, or are my symptoms not potassium related?

**I'm not sure. You will probably need potassium in the future. When folate comes up, your cells will be able to divide more rapidly to form new cells, and that demands potassium.

Also, regarding folate & methB12, should i stop taking them for a few days(or longer), or continue taking them but in a lower dose as you suggest?

**I would suggest going to a lower dosage. Say, 400 micrograms of methylfolate, and 2,000 micrograms of methyl B12 per day.

Much obliged for your response, especially in times of 'crisis' and given the fact that doctors over here seem rather clueless regarding these things..

Warm regards,

dece

**Ypu're welcome. If you don't mind saying, where are you located? I'm just curious.

**Best regards,

**Rich
 
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