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newbie - where do I start?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by kelly138, Nov 22, 2012.

  1. kelly138

    kelly138

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    I recently saw a ND who gave me a treatment plan which includes several methylation supplements. They seemed to think I had 2 MTHFR "flaws". I am unsure to believe the testing as I assume it should be some kind of physical evidences like blood test or the like and it wasn't.

    However, I do admit my liver doesn't detox things well and I know I have had problems in the past with sulfur but not as much now.

    I was told to get Hydro B12, 5-MTHF folate, folinic acid, TMG, and some other supplements unrelated to methylation. The doses I was told to take were rather large imo. I started with some dibencozide B12 that I had, then added methyl folate yesterday and today took methyl folate and the Hydro B12 - all in smaller doses than suggested. I know I react to things.

    I didn't notice a reaction to the B12 but I sure did to the folate. My liver ached and I got "hyper" - vibrations inside. Is this normal?

    Where should I start on reading this forum?

    Is there anyone who can mentor me through this process?

    What is the biggest thing I should be aware of being a problem?

    How will I know it is working?

    Thanks

    Kelly
  2. justy

    justy Senior Member

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    Hi Kelly, i'm afarid this isnt my area of expertise - i just wanted to say hello and welcome to the forum. I am sure some knowledgeable type will be along soon to give you some guidance.

    Take care, Justy x
  3. kelly138

    kelly138

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    The inner vibrations got stronger - I cut back on doses today to about half of what I took yesterday so today I took about 500 mcg Hydri B12 and about 100 mcg methylfolate. I have tried to stay away from any enriched foods so nofolic acid today or yesterday but did have some 2 nights ago as well as some in a B- complex which I haven't taken this past 2 days.

    I noticed yesterday after my epsom salt soak (1 cup ES and tub) I was shaking inside more and a lower intensity of it persisted all night. I don't normally react to epsom salts in that manner so is this related?

    I am also experiencing some kind of "detox" as my ears are wanting to explode - more so yesterday than today.

    I have an increase in salty tastes on my lips and have had some metallic mouth as well as other strange (can't say what they are) tastes; my saliva is strange tasting too but more than just metallic. I also noticed since starting the B12 about a week ago my stools are very light colored.

    I realize this is a forum about CFS/ME. It was the place to look at methylation. I do have a diagnosis of Fibromyalgia from 2002 by a board certified rheumatologist not CFS. I have been diagnosed by main stream docs (professors at med schools who are authors of articles on it - don't necessarily agree with what they suggest) to have Multiple Chemical Sensitivity.

    I suspect iron overload and am awaiting results of blood work. If it is true the diagnosis is long overdue and could possibly explain so much of these past years.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    kelly138 Rich wrote about the tolerance of epsom salts baths--he started a thread on it: http://forums.phoenixrising.me/inde...-h2s-urine-test-and-epsom-salt-tolerance.244/


    Correlation between H2S urine test and Epsom salt tolerance

    Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by richvank, Aug 14, 2009.
    richvank Senior Member
    1. Hi, all.

      I want to ask for help in testing a hypothesis. Some of you have taken the hydrogen sulfide (H2S) urine color change test, and some of you know whether or not you can tolerate Epsom salt baths.

      I would like to know what the correlation is between the result of this test and whether or not a person can tolerate Epsom salt baths. (Note that some time ago, Susan Owens, the owner of the sulfurstories internet group, started a separate group about Epsom salt intolerance. We kicked this issue around a little there, but haven't reach any conclusions about what's going on in these cases. I think that this new urine test may provide some insight.)

      My hypothesis is that people who test positively on the H2S test do not tolerate Epsom salt baths.

      The rationale is as follows:

      The urine color change test gives a qualitative measure of the concentration of hydrogen sulfide in the urine. It has been suggested by Dr. de Meirleir that when the H2S level in the urine is high, it means that there are bacteria in the gut that are producing large amounts of H2S, so much that the normal sulfide oxidase enzyme in the wall of the gut is not able to oxidize all of it and convert it to thiosulfate, so that it passes into the blood and is then filtered out by the kidneys and excreted in the urine.

      If this is true, it must mean that there is a significant population of sulfate-reducing bacteria in the gut of a person who has a positive H2S urine test, since these are the types of bacteria that produce H2S.

      Epsom salt is composed of magnesium sulfate. As far as I know, there is no pathway in the human metabolism itself that can chemically reduce sulfate, and normal, healthy people are able to tolerate Epsom salt baths and to benefit from them, as their body absorbs both some magnesium and some sulfate through the skin. Both are normally found in the body and perform important functions. One of the functions of magnesium is to relax the muscles. One of the functions of sulfate is to help the cartilage in the joints to retain water, and thus to cushion the joints. Epsom salt can thus help both muscle and joint pain in a normal, healthy person.

      If a person is intolerant of Epsom salt baths, I think the reason is that some of the sulfate is chemically reduced to hydrogen sulfide by sulfate-reducing bacteria in the gut. Some of that is oxidized to sulfite by the human sulfur metabolism. Both hydrogen sulfide and sulfite are toxins if they reach high enough concentrations, and they will both produce unpleasant symptoms.

      So far I've heard from one person who tested positive, and three who tested negative, and all four are consistent with this hypothesis. Four is not a big number, and I would like to accumulate some more data for a preliminary test of this hypothesis.

      So I would appreciate it very much if those of you who have taken this urine test, and also know whether or not you tolerate Epsom salt baths, would post this information together. It would also be interesting to me to know what the symptoms were for those of you who did not tolerate Epsom salt baths, when you tried it.

      The purpose is to get a better understanding of one of the mechanisms of this disorder. Gut dysbiosis is a big factor in CFS, and the more we understand about it, the better position we will be in to correct it.

      Thanks very much.

      Rich
    Padeyas likes this.
  5. Ema

    Ema Senior Member

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    Hi Kelly -
    Welcome to the forums...there are lots of people here with overlapping diagnoses so you will fit right in.

    As far as methylation, I would start with the stickies in the Methylation forums...these describe both Rich VanK's simplified protocol as well as Freddd's protocol for increasing methylation.

    Have you considered having the testing suggested that is done through Vitamin Diagnostics to assess your methylation status? You can also do follow up testing to look for improvement after you have been on the protocol for a period of time. The best evidence that it is working though is that you start feeling better!

    Those forums are also great places to post questions. The protocol seems to be pretty specific to individuals though and I've not had a lot of success with getting general recommendations. I think it is new enough to still be a lot of trial and error which is not easy. Fortunately, the supplements are not toxic at normal levels so it is usually more a matter of uncomfortable rather than danger (potassium dropping however may be an exception to this rule so I would look for Freddd's posts on this topic and know your levels with a regular CMP from any lab).

    For me, the road to recovery has been a combination of the methylation protocol, antibiotics/antivirals to beat back the opportunistic infections that have ravaged my immune system and hormone treatments. I have to say, just from your posts, that it sounds a lot like you have undiagnosed endocrine problems maybe as much or more so than methylation problems. Internal shaking and MCS were huge problems for me with undiagnosed cortisol deficiency (Addison's disease). These cleared up almost immediately with replacement doses of cortisol.

    Low thyroid also fits into this profile especially the pain found in fibromyalgia. Generally people with this type of hypothyroidism have within range TSH and low normal FT4 and so are pronounced fine. But if you look at the actual numbers and the FT3 (which is the active thyroid getting to the cells), a different type of cellular hypothyroidism is apparent. Treating this often relieves the muscle pains attributed to fibromyalgia. Magnesium is also important as it is often depleted in fibro.

    You might look at these websites:

    http://nahypothyroidism.org/
    http://www.stopthethyroidmadness.com/

    If you have not had this basic sort of endocrine testing, I would consider doing so. I would consider the following important:

    Saliva Cortisol 4x/day
    TSH/FT3/FT4/RT3
    TPOAb/TGAb (thyroid antibodies)
    CMP
    Vitamin D
    Vitamin B12
    Magnesium
    Full Iron Panel (Serum Iron, TIBC/UIBC, % sat)
    Day 21 Sex Hormone Labs (Estradiol, Progesterone, Free Testosterone)

    Hope that helps!
    Ema
  6. kelly138

    kelly138

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    I want to thank you 3 for your replies. I also want to thank Sushi for chatting with me some 2 nights ago.

    I am fairly familiar with Rich's protocol - have read it several times - even read earlier versions of it 5 years ago when I got so terribly sick. I haven't really looked at Fredd's and started looking some last night but the mind wasn't working well. I spent my time reading the hair element test thread and finished reading that one today. As a former moderator at a small forum I realize how difficult of decisions the moderator team faced in dealing with the discussions on that thread. I think a regular member with no moderation experience isn't always able to grasp how difficult these decisions are.

    The blood work I hope to get back this week includes Vit D (which I know is on the low side - in the lower 30's 2 months ago but it was under 5 18 months ago), B12, Folate (I think), CMP (nothing wrong on this except glucose was 100 2 months ago), iron panel, TSH with free T3 and free T4, fasting insulin, CBC, lipids, - not sure magnesium was included and the rest of those weren't from what I recall. I supplement magnesium - lots of it. What bothered me with the blood work 2 months ago was my liver enzymes were not elevated (my liver told me otherwise - I have had liver problems for over 60 years), and I asked for an iron panel and was refused it. It was also done at a lab I had never heard of so I question the results and the ND didn't have a problem reordering things.

    I have started (again) supplementing potassium - not much yet but the diet I am to get to drops some of my potassium rich foods. I am very aware of needing to keep a K/Na balance fine tuned and have tried to recognize the symptoms of imbalance over the years failing miserably however 5 years ago I think; the blood work showed it too but the medical people didn't bother to notice the blood work was off repeatedly. I had way too little Na for several years. I am aware of heart irregularities with the K/Na balance off.

    I am aware this test - Saliva Cortisol 4x/day - was done 15 years ago with no conclusion given - some reading were high, some low - the doctor ordering it didn't see a pattern.
  7. kelly138

    kelly138

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    the internal shaking I am writing off (perhaps wrongly) to some kind of toxic overload - I know I am sensitive to free glutamate and MSG or sufficient free glutamate will set off the shaking - fluoride toothpaste will too if I am very sensitive - so I think there is some kind of toxic release or exposure as a result of the B12 and methylfolate - I can use help in determining exactly how this is happening and what it is- I am also over 2 years out from a "benzo" type withdrawal (z-drug) and had lots of tremors, palpitations and shaking with that

    as far as Epsom salts goes I know some people react poorly to them - I normally don't - I have been doing daily soaks for well over a year now - sometimes 1 1/2 cups - sometimes that would make me fall asleep in the tub - lately it hasn't been but I don't normally come out of the tub shaking like I did yesterday (didn't today) - again I think there is some kind of detox going on - when I was doing bentonite in the tub too this summer / fall I reacted poorly like this -

    I blamed it on iron - not sure that is right - but I was doing oral bentonite too and at least the iron in oral bentonite can be absorbed - not so much the bath soaks but the BP would spike and the liver flared until finally I figured out it was the bentonite doing it and stopped ALL of it but that blood draw 2 months ago was before I figured it out

    I would get simultaneous burning and metallic mouth flares (bad ones) with bad liver spasms and these have settled down since I quit the bentonite - I might get these symptoms but they aren't all at once.
  8. kelly138

    kelly138

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    I saw the ND again and she went over the blood work she had ordered. She feels I am probably "hypoadrenal" but that isn't the most pressing problem.

    I am not in Iron overload - in fact my iron saturation was borderline low. It doesn't explain why my mouth symptoms (burning, salty metallic tastes) gets worse after I consume more iron.

    My thyroid was fine, TSH, FT3, FT4

    My total cholesterol was a little high but my HDL is why - it is fairly high.

    My AST and ALT were higher than she would like; we already suspected this problem and in fact the blood draw 2 months ago they were lower and my liver was killing me at the time. It wasn't for this draw - doesn't make sense.

    The WBC was low (I have seen this before).

    The B12 was lower than she would like, the folate was higher than what they measure to.

    So she still wants me to take a lot of B12 (Hydrox) and I said I couldn't handle that much; I had stopped the B12 and MFolate because I was shaking too much. She said to keep the MFolate low for now - basically where I started.

    She wants me to take lots of TMG - that scares me. I trialed it 5 years ago and got really bad tooth root pain. I tried it again a couple years ago - same - I tried Betaine HCl one dose just a year ago - same bad tooth root pain. I had bought bulk and started at 100 mg last night and will raise it 100 mg/day if I can handle it but she wants a total of 5000 mg./ day. She feels the TMG and taking electrolytes with the B12 are what is needed.

    We did discuss electrolytes and I will use the bulk products I have on hand. I have several bulk Mg products, a couple Calcium products, one Potassium product and tri-salts. An of course I have a couple kinds of salt.

    I was taking taurine and l-arginine and she wants me to drop them - I need to taper off them I think - cutting them to half doses last night gave me about zero sleep.

    She wasn't familiar with the probiotics I had but accepted them. I told her the one she suggested had gluamine in it and that I heard with wasn't safe for a glutamate sensitive person but that I hadn't researched it. I have an almost full 2 oz bottle of custom probiotics 11 strain. I gave her the link to the CP site.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Kelly 138

    Does your naturopath understand how TMG affects the methylation cycle? My understanding is that unless you have some SNPs around it, it is best to keep it low. We used to talk about it stimulating the "shorter" methylation path, and that isn't necessarily what you want to do. Here is a quote from Rich:

    Sushi
  10. kelly138

    kelly138

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    I have read what Rich had written but haven't reviewed it again this past few days. I think he had TMG mentioned in his protocol 5 plus years ago which might be why I bought it back then. Isn't lecithin in his last protocol?

    She did say to expect a "healing crisis" with this and to contact her via email if I did.

    She also asked me about how I reacted to Epsom Salts - it does vary. It isn't always refreshing.

    I actually don't expect to end up very high with TMG; I will see in time and I will slowly raise it. I had Source Natural 750 mg caplets before I think it was: I couldn't handle 1/4 of one each of the several times I tried it.

    Right now my main question (and I haven't researched it yet) is why did she drop way down on her folate suggestions. Is the fact that my blood work showing high levels the reason? Is having high levels unusual? I am not sure what form is in the blood - as I said I haven't researched it.

    I took 200 mg TMG, 500 mcg B12 and about 125 mcg MFolate today. I can tell the difference in tastes in my mouth - metallic salty ones and increase in burning mouth. I can't drop the l-arginine down unless I have something else to control the mouth pain (it helps).
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    kelly138

    The B12 and folate measurements are pretty unlikely to reflect "active" nutrients--in other words, meaningful test results.

    He was recommending about 25 mg of TMG.

    Sushi

    P.S. I should amend that--25 mg was a starting dose which could be doubled or quadrupled as tolerated.
  12. kelly138

    kelly138

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    hmm - so the values don't mean much for them -

    and 25 mg isn't a lot - 100 mg is about 1/32 t of bulk

    I got more research to do - good thing we aren't going anywhere tomorrow
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Standard lab tests for B12 and folate measure total B12 and folate and in patients like us, a lot of that is likely to be inactive or oxidized. Again, quoting Rich:

    To measure active folate, he recommended measuring Formiminoglutamate (FIGLU), also in the organic acid test. That is, if you don't want to do the methylation panel, which will give the most accurate results.

    Sushi
  14. kelly138

    kelly138

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    right now to do more testing it needs to be ordered so that insurance will cover it - at least that is the ideal way - I have a hard time pushing more let's pay for this test at 100 % through the family budget - I can do some but ......... am limited right now somewhat - most people are

    what I do know right now is this ND did more testing and interpretation of tests than I had seen in a long time - the mainstream medical community said ------ get lost basically ---- a message many of us get

    so right now I have to take what I was told, tests that were done and work with them until such time that I can get more financed etc.
  15. madietodd

    madietodd Senior Member

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    I can only offer a few random facts. I'm just now (today!) doing the saliva test you mention, for the 3rd time. Results more than a year old are useful for comparison, but of course tell you nothing about your current adrenal picture. My curve is backwards. It's within normal range, but low am and high pm. So it's no wonder I'm sluggish in the morning and have insomnia.

    I take Hb12 and methylfolate. I don't take any other b12 or any other (supplemental) folate. I haven't seen discussion here about people taking all 3 forms of b12, so that sounds unusual to me.

    Madie
  16. kelly138

    kelly138

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    what kind of symptoms will show that methylation has been triggered?
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It may not be obvious and would probably vary from patient to patient depending on their individual problems.

    Some notice an increase in detoxification as that is one of the "jobs" of glutathione.

    Sushi

    P.S. if you want specific members to see a question or a post, either quote them or tag them--like this: kelly138. Otherwise there is a good chance they will miss your post. :(
  18. kelly138

    kelly138

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    I have noticed a big increase in salt and chocolate craving this past 2 days.

    The mind seems clearer; the eyes are drier, the congestion is more as well as sneezing too. The stools are better looking but not that great - just they were pretty bad to start with, the liver pain is less too. I was able to nap (first time in a while) during my Epsom Salt soak yesterday.

    I am seeing improvements in my CPAP data too.

    I am taking the TMG - 400 mg was all yesterday. I am wondering if that is part of it too.

    I am not used to this forum - it has capabilities I am not used to seeing and is too big for me to handle right now.
  19. Padeyas

    Padeyas

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    this is a very insightful post. its my belief that my possible elevated hydrogen sulfide (will test to confirm) is leading to my brain fog/fatigue. I'll def test this theory via a Mg sulfate bath.

    thanks again,
    Keith

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