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feel really bad @3 months? keep on?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by suzanne, Oct 18, 2011.

  1. suzanne

    suzanne Senior Member

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    Can anyone tell me if this gets better at some point if I just keep going- it is now about week 11?
    I am feeling really bad- all my prior symptoms are worse. Increasd head pain, increased itchy skin and really tired- some nausea in waves. The only thing that has seemed to improve is my stamina later in the day.

    I am taking all the co factors except viamin D as it makes me itch. I am on mb12 1000mcg and methyl folate 600mcg. Anyone got any experiences that might help? Does this just require that I give it more time or should I be trying to increase my dose of m b12- last time I did that i got even worse. Not sure what to make of this, I st of hoped that at this poit I ight be feeling better.
    Thanks to any insights.
    Suzanne
     
  2. harrycat

    harrycat

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    Hi Suzanne,

    I don't know if I can offer much but I wondered if you have tried using hydroxy b12 as per the Simplified Protocol? I started with this and got a positive response from the start (though detox lately). I know Rich says something about hydroxy b12 being the form the cells can use in whatever way is required (I'm sorry if I'm not putting this correctly).

    Also I wondered if you could stretch to having some testing? I recently had an amino acid plasma done as well as a urinary organic acid and found out so much useful information - ie all my amino acids are low, I'm not absorbing properly, etc so I have new ideas for important things I need to do.

    I'm sorry you are feeling so rough and wish you better times.
     
  3. suzanne

    suzanne Senior Member

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    Hi Harrycat,
    thanks for the kindness. We all have a struggle with getting better with this disease, and I appreciate being able to learn from others that have trod the same path before me.

    Like you, I have had the amino acids and organic acids tests. All my amino acids are low as well. I supplement for this with a very small dose of the pro health amino acid complex. I take only 1/4 talet of this blend- it has very similar amino acids to the much more epensive Holistic health product which is meant to be good for those with ME. I guess the question for us all is why are the amino acids low in the first place- i a sure it is not just a fluke finding that stands alone.

    I did start a year ago on the yasko protocol and took hydroxy b12 for 3 months- made no difference at all. (At least the m b12 made me feel something, even if it has been to exacerbate most of my symptoms) I gave up on the methylatin cycle when the hydroxy did not work but then recently found (after more tests) that i am an undermethylator and this may account for why i did not have success with the hydroxy. My dna also bears mutations on some of the genes that will afect my need for the methyl donors ie I have a homogeneous mutation on VDR taq and hetero for MTHFR genes: C677T, 3, A1298C, and A2756G.

    I reckon that one of my problems in being able to get the methylatin cycle up and working might be mercury. I have various tests that suggest mercury and candida are a problem, the trouble is i get so sick when I try to chelate mercury. I have tried so many differnet products over time like, dmsa, modified citrus pectin, humifulate and more recently brown seaweed or laminaria japonica. These products all cause me symptoms of nausea, headaches and itchy skin (almost like a candida die off feeling)

    Others may have some experiences to share on the chelation of mercury?
     
  4. Vegas

    Vegas Senior Member

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    Low in amino acids means poor absorption, probably caused by hypochlorhydria. Do you have sore spots on your lowest ribs two inches or so over from the sternum? Are you supplementing with HCL? Of course if you are mercury toxic, you can bet your zinc levels are abysmal, so you should be supplementing 50-100 mg daily. Yet another one of those cyclical self-sustaining processes that keeps you sick. You need zinc for HCL production yet HCL is needed to absorb the zinc. Have you had a hair elements test?

    3-4 months was probably the hardest part of the methylation protocol for me. It did pay dividends, and I would recommend you stick with it, but if you really want to get better, you are going to have to deal with the HM problem. It won't go away on its own. your symptoms do sound like candida die off symptoms, but none of these are unusual for chelation. The intestines and liver are primary target organs for mercury. From my experience the Hg has seemingly come out of the intestines, first. Once it is gone or greatly reduced, normal flora can once again dominate the pathogenic stuff including the yeast. Really hard to win that battle with a HM burden. Not sure how much of it is intestinal Hg versus low glutathione, vs. all the other secondary problems like, mito dysfunction, low acid, high oxidative stress, etc. Seems to be a mix. Methylation gave me a nice bump, but chelation is finishing the job. Both of them have very onerous "side effects." Your chelation protocol should be Cutler or nothing, and if you cannot tolerate it lower the dosages until you can...of course please don't chelate with amalgam in place.
     
  5. aquariusgirl

    aquariusgirl Senior Member

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    I think the problem is that these methylation support protocols make your GSH status WORSE before it gets better. The first batch of patients who tried this protocol found that...there are tests in the files section of the cfs yasko yahoo group that show this & rich has said as much.

    So in general oxidative stress gets worse & I suspect if you have a high viral load you will find it a massive struggle to get your GSH into positive territory until you get the viral or pathogenic load down.

    I think a cerebral folate deficiency and a methylation cycle are serious problems at the heart of this illness. I just don't think this protocol will be a standalone option for many of us ....or the best starting point necessarily.

    And you better make sure you have some chelators or binders on hand for those waves of nausea or you are just going to recycle most of those toxins.....esp. if your gsh is going down.

    Don't wish to sound negative. Got significant gains with this protocol. ....just think looking back it would have been easier on me had I done some other stuff first.

    ETA: I feel bad that my comments might undercut all Rich's hard work, so let me say, that maybe one could offset some of the unpleasant side effects, or effects, of the protocol by taking some other treatments that are glutathione sparing (maybe antivirals) or by taking large dosages of glutathione itself.

    But like Rich has said, you have to be careful adding glutathione to someone in oxidative stress, because it just gets converted to more oxidisted glutathione.

    I don't know how much you would have to add to get around that problem.

    I wish someone would figure out the right combination and sequence of treatments. If they do, let me know!
     
    justy and anne_likes_red like this.
  6. Red04

    Red04 Senior Member

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    Are you taking adb12 as well?

    My advice would be to keep going. My wife's syptoms got worse (real bad) at times for around 3 months. After 3 months or so she kept healing and was about 90% better. The healing or whatever you want to call it was so slow so that it was hard to tell what was what. It was harder (and more frustrating) to decide what was a bad reaction, what was a start-up response or relapse or detox or healing. After dealing with CFS for 2+years with no help from the doctors, we didn't have many options, so we kept going. The initial startup was bad enough that I think my wife would have quit if I didn't keep pushing her.

    I would put your head down and try to push through the protocol for 6 months. My wife ran a triathalon at ~6 months. The payoff will be worth it and I am still amazed at my wifes recovery from a few supplements. Also, to help "prove" this works, if she quits taking them for around 7-10 days her symptoms come roaring back.
     
  7. Red04

    Red04 Senior Member

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    Forgot to mention that a lot of the start up responses were subdued with potassium. My wife had very "pointed" head aches on her temples. Potassium helped. Take 3-4 99mg doses over the course of an hour with lots of water.

    The nausea was always a problem, even after she was better. This was always within an hour of taking the supplements. You may have some luck adjusting the timing around meals.
     
  8. aquariusgirl

    aquariusgirl Senior Member

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    She needs some binders or chelators. I bet the nausea would go away if she took pectasol, or sarsparilla or activated charcoal or any chelators or maybe some glutathione. I think she is probably suffering unnecessarily. Very unfortunate and probably completely avoidable.
     
  9. Jenny

    Jenny Senior Member

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    On nausea - I've never found anything that helps. Tried charcoal, ALA, glutathione, cholestyramine, all sorts of other supplements, medications and binders. I get it every few months, it lasts a few weeks, then calms down a bit. Sounds like mine might be a bit different from this though, as it has no relationship to taking particular supplements.

    Jenny
     
  10. suzanne

    suzanne Senior Member

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    I am so fortunate to have got so much input. It is definitely a tough time at this 3 month point and I was hoping it would get better- but for the time being the headaches, migraines and nausea persist. The itchy skin and nausea is worse some days than others. the headache seems really bad all the time..could i be getting rid of mercury on this protocol? Just a thought that if my glutathione level is increasing then the ercury might be shifting?... but basically all my preexisting symptoms have been made worse by this protoco- so I just hope this means that something is shifting and i will eventually feel better than I did when I started. It is so hard to feel worse for a long period of time.

    Dealing with specifically, what has been suggested:
    Potassium.
    I seem to get bad GI burning no matter what different form of potassium i have tried. o, I am now taking celery seed extract capsules ( a huge dose- like 3 tablets, 3 times a day). This has stopped the muscle spasms I was getting, but it has not helped my other symptoms- perhaps they are not to do with potassiu?

    Binders
    I have re introduced charcoal and i will see over the next week whether this helps. i have also addedd psyllium to this appraoch as they say this helps.

    heavy metals
    I react so badly to any of the suggested approaches to mercury chelation. I think it ay be too soon to introduce chelation when i am only at the 3 months point on this methylation protocol and still having significant promlems. BUT I take the point that at some stage, the mercury will need to be dealt with- a merury toxicity probably explains why i have never had any success in getting on top of the candida. I have had all my amalgams removed over the last 5 years (by a dentist that used all the right equipment- rubber dams, face mask)

    I will come back to the mercury when I feel a bit better- hopefully in a few months. I have so far experimented with low dose dmsa, modified citrus pectin, humifulate, clay foot baths and brown seaweed capsules. ALL give me what feels like candida die off symptoms- severe nausea, headaches, itching.

    The most tolerable is the clay foot baths (only seem to make me tired) but maybe this means the clay foot baths are not effective. I will come back to HM when I feel better equipped to deal with more detoxification.

    Thanks to you all for your help.
     
  11. aprilk1869

    aprilk1869 Senior Member

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    This is just a thought but have you considered the area of parasite infections? Some doctors such as Klinghardt are using this approach due to the fact that parasites are big and you should start with them and work your way along to bacteria and viruses which are smaller. The problem is deciding the best way to approach this.
     
  12. Sasha

    Sasha Fine, thank you

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    Hi suzanne - I also had bad GI problems with potassium tablets so now eat a couple of bananas (about 400mg potassium each) and a glass of Vitacoco coconut water (560mg potassium per glass) a day. I don't have any problems with them.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    Itchiness could be from food or meds triggering your mast cells to release histamine.
     
  14. Gloria H

    Gloria H

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    Hi Suzanne,
    I'm just starting Mb12 & metafolin. I've had bouts of fatigue over many years. In 3/2009 I was really down and found a local practitioner associated with DiagnoseTechs lab that helped me. Now my adrenal tests & Vitamin D are in normal range & I started to read a lot of Freddd's comments & started some Mb12 & metafolin to make further progress. The B Complex [B-Right] made me itch. But I discovered that doesn't happen if I take Solgar 800 mcg folate/metafolin at the same time. Itch has been a frequent symptom for me. So to find this new form of folate avoiding & stopping itch has made a big impression on me. Blessings to you!
     
  15. blue sky

    blue sky

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    While everyone is different, I used molybdenum supplementation during the initial part of the methylation protocol. This was on the advice of my doctor who treats many with ME/CFS. I used as much as 1000 mcg per day (per his recommendation) for a short time (couple of months). This really helped with the headaches especially. Later, as the headaches decreased, I lowered the amount to about 75mcg per day. I believe my doctor said that the molybdenum helps one to handle the sulfur (turns sulfite into sulfate). You may want to try a liquid molybdenum (Yasko's site sells one), and start small...
    Good luck.
     
  16. xrunner

    xrunner Senior Member

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    Hi Suzanne,
    I can't comment on how long the methylation cycle treatment is supposed to turn things around as it never worked for me. However, there's a presentation with helpful info on the topic
    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    Potassium: eating lots of greens you should give you all potassium and other minerals you need.
    Binders: if you can't tolerate any, you can try daily oats porridge and a couple of tablespoons of flaxseeds blended in smoothies.
    Heavy metals: I would try the Cutler protocol, plenty of practical information in the "informative posts" section below
    http://home.earthlink.net/~moriam/

    Finally, anybody really struggling to make progress should perhaps try a good, and I mean good, kinesiologist or Naet practitioner. It's helped me a lot overcoming blocks thrown up by treatments.

    All the best.
     
  17. rydra_wong

    rydra_wong Guest

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    I believe the nausea is caused by food (certain foods anyway) sitting in the stomach from hypochlorhydria (which I also have).
    I take the supplemenst anyway and take slippery elm with them -- if that isn't enough I occasionally take mastic. I know I should
    take HCL but taking HCL with a whole boatload a vitamins I fear would turn them into an awful brew!

    It is not true that you get enough potassium from fruits and vegetables. Most people do not eat more than 3 fruits and vegetables/day yet the government through analyzing many studies has said via MyPyramid that we need 7-9 fruits and vegetables/day for health. Also, there are many many things which cause you to lose potassium.
    A low blood sugar attacks causes so much potassium loss that it takes SIX bananas to replenish. [Adele Davis, Let's Get Well, footnoted from some study]
    From http://ithyroid.com/arthritis_and_potassium.htm (by my friend Charles Weber - it is part of his book on potassium to cure arthritis):
    A magnesium deficiency can cause the body to lose potassium [Peterson 1963][MacIntyre][Manitius], possibly because of a poorly understood effect of magnesium on the efficiency of energy supply to the sodium pump. [Aren't CFSers low in magnesium?]
    Rats on low sodium excrete more potassium than controls from all causes, including increasing the sodium intake above normal[Peterson][Wormersley]. It would seem that a very low or a very high sodium intake would increase the potassium requirement [the American is extremely high in salt].
    It has been determined by LaCelle that the whole body potassium is significantly lower in older arthritics. The body can sink to almost half of normal in some cases [LaCelle]. [NOTE that arthritis is UBIQUITOUS]
    Most of the death rate from the more virulent diarrheas in children is from an acute potassium deficiency. The death rate was markedly reduced in one virulent strain using potassium supplements [Darrow][Govan]. The dead babies showed a loss of 40% of their muscle potassium. The dehydration which can take place in diarrhea can cause massive losses of potassium in addition to the losses in the faeces. Every liter of water lost from the cells carries with it 6.5 grams of potassium [Weisburg p189].
    You must be careful with supplements because the dehydration causes very high blood plasma potassium contents, even though the cells are becoming deficient. At the same time the aldosterone goes away down. The way medical people get around this these days is to administer oral rehydration salts (ORT salts) which are a mixture of sodium and potassium chloride and sodium bicarbonate in water.
    Vomiting which persists can also deplete the body's potassium somewhat [Barter]. Barter believes the loss of hydrochloric acid is as important as the potassium loss in reducing body potassium. This is because when acid is lost the kidneys excrete more potassium [Welt p215][Potts p262] thus countering the alkalinity implied in the loss of chloride. The stomach secretes over 1/2 gram per day.

    (you know it's a whole book and I can't quote it all. Here is where you can get the book if you want: http://members.tripod.com/~charles_W/arthritis.html)

    According to Charles Weber, this British group successfully treats arthritis with nothing more than potassium: http://charlesdecoti-marsh.org/ based on a book by their founder.

    Every time I read his stuff I learn something new. Here he links low potassium to gout. I had several gout attacks of momentary duration and I eat a low protein diet so something else obviously triggered it. Here is what Charles says:
    I have no information in the medical literature on any direct link between gout and a potassium deficiency. I have a strong suspicion that there is a link however. I have heard of a doctor who gave his patients potassium losing diuretics and thus triggered an attack of gout. By adding a potassium supplement he was able to remove the gout. William Ellis has used potassium supplements for years for gout [private communication]. Gout can be triggered by the same agents which cause potassium losses such as fasting, surgery, and potassium losing diuretics [Rodman]. A potassium deficiency can increase urate levels in the blood [Davis][Halla] so there is a circumstantial connection.
    Also some tie to low blood sugar -- this could be a contibuting factor to mine:
    A glucose intolerance develops exclusively associated with lower insulin secretion rather than cellular response to insulin [Rowe][Gardner 1952]. It could be an adaptation to avoid low plasma potassium resulting from the potassium entering into the cell in order to associate with glycogen which would otherwise occur. Low cell potassium can inhibit the insulin response independently of serum potassium [Spergel].
    and those who ARE low in magnesium...could it have been caused by being low in potassium? Charles says: Urinary excretion of calcium, magnesium and phosphate is higher during a potassium deficiency in Dahl rats. It is thought that the reduction of magnesium is what causes the association of potassium with hypertension by virtue of the affect of magnesium on the power of the potassium-sodium pumps [Potassium depletion and salt sensitive hypertension in Dahl rats: effect on calcium, magnesium, and phosphate excretions.] Six months are required of magnesiumm supplements before complete normalization of pumps [Potassium and sodium, and potassium pumps in the skeletal muscle]
     
  18. rydra_wong

    rydra_wong Guest

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    True, molybdenum is needed to turn sulfite into sulfate and the sulfate is needed to excrete toxins. The enzymestuff website said something about Epsom salts helping with this because it is Magnesium Sulfate (so then it doesn't matter if you can't make sulfate). Molybdenum prevents copper uptake so it can be problematic if you have a copper deficiency (if you are a post menopausal female proceed carefully). It's a well known problem among cattle ranchers in areas with high molybdenum soils. Remember copper deficiency has exactly the same symptoms as B12 deficiency. It can make you unable to walk. Because copper is a cofactor of methionine synthase. If you actually have a molybdenum deficiency you need to deal with it of course just be aware.
     
  19. suzanne

    suzanne Senior Member

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    Wow. thanks for all the input.
    A week down the track now and I have introduced more natural potassium ( bananas and coconut water- great suggestions).
    I have also gone heavy on the charcoal powder- 3 teaspoons twice a day away from food and supplements. This charcoal has made a tremendous difference- I am suffering about 50% of the symptoms of nausea, and itchy skin- not gone completely but way more tolerable ( I sometimes feel human!) PLUS, I have not had a migraine for 2 weeks- that is better than feeling like i get kissed by that demon every day:)

    I am now feeling hopeful- again- it is so much easier when you are not feeling poisoned- or like you have the worst hangover every day- phew, and thanks again. it seems like we are all different n the time it takes to start feeling a bit better, for me, the 3 month point is still causing a lot of toxic type symptoms. I hope that the 4 month point might be a bit better.

    oh, BTW, I reckon that the clay foot baths are doing something- I do them every 3 days or so and after them the itchy skin is worse and I feel really tired for a day- perhaps it really does detox the mercury. I dont think it is doing any harm and I know that I cannot yet tolerate the cutler protocol.
     
  20. endomeister

    endomeister

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    If you have genuine reason to be concerned about mercury, I'd consider selenium as a supplement.

    A lot of people focus on supplements but I have to say they are no substitutes for healthy, organic vegetables. Especially mixed green salads, etc.
     

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