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One year on Methylation treatment - new health issues

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by PennyIA, Jun 11, 2014.

  1. PennyIA

    PennyIA Senior Member

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    I'm still struggling to read just the one single post about the deadlock quartet and signs and symptoms that might be concerning and the need to look at adjustments. But, for some reason, my brain just doesn't comprehend. I think it's because I get to the third group and I might have one symptom in one list, but not the others, etc... and I just can't quite figure out how to translate it into these are my five symptoms -- what might that mean?

    Anyway... I've been working with a Doctor for a year and working one getting my methylation process working better. Forgive me for lack of references - my mind/thought process is improving in that I'm able to tie together more details - but tying the details I learn back to the studies I read to get them is still a little beyond the scope of my abilities at this point in time.

    No official dx of CFS nor ME - but meet all the ICC criteria. Have been chronically ill for 9 years with two episodes of bed rest and the rest of the time spent working, but 'walking dead' outside of work.

    Taking - methylfolate, methylcobalamin, lipsomal vitamin c, ALC, NAC - was taking a B12 complex to get hydroxycobalamin and anenosylcobalamin - but not lately.
    Rx - Armour thyroid medicine
    Diet: Gluten free/dairy free/low soy ... nothing heavy in saturated fats, nothing greasy/oily/fried.
    Alternative treatments: chiropractor, acupuncture

    My first symptom might JUST be a signal that my methylation process is working better.

    1. Gout
    ... why I think it's a sign that my methylation process is improving

    a. Gout has been rarely found in patients with CFS/ME and/or Methylation defects
    b. Gout is caused by purines (found in food) being converted to Uric acid (normal process) - but too much uric acid creates crystals which causes gout
    c. The methylation process impacts the processing of purines into uric acid
    d. Poor methylators actually tend to do better on high purine foods (still looking into more details here, but per Rich - it might be tied to the fact that purines that aren't broken down get recycled... might be related to some offshoot of that.
    e. Since purines aren't getting broken down as well for poor methylators - improving the methylation process means that more purines ARE going to get broken down into Uric acid
    f. my gout symptoms didn't appear until AFTER about six months of methylation treatment
    g. my diet is NOT contain any foods high in purines - however, I don't know if there was a 'build up' that needs to get processed out... at this point I am treating with A-C carbimide (a high alkaleine mineral) - it handles the pain more effectively than pain killers and doesn't seem to have any negatives that I can find over the basic minor risk factors

    2. Blood clots
    .... a much more concerning new (er) symptom

    History:
    I had a pulmonary embolism in 2004 after I'd been on and off (and on again) birth control pills. I've had preventative treatment every time I've had surgery, but not really any other time. I've developed one superficial blood clot after one of my surgeries (at an IV site) and identified as having two risk factors for being at risk for clotting - MTHFR (treating) and Protein C Deficiency (a rare, inheritable, clotting disorder).

    FWIW - high homocysteine at the point of the PE directed the doctor to recommend folic acid, b6, b12 (and I didn't know any better about forms of vitamins)... within three months of taking those supplements, I had my first crash.

    Protein C Deficiency is inheritable (and believed to have come from my father who died young from blood clots)... and in the clotting cascade, it's the bindings of the c proteins to the Factor V proteins that indicates when the body should STOP producing a clot (i.e., you've sealed the cut, let's stop and not go overboard). Since I don't have enough Protein C being created by my body - once it decides it needs to create a clot - it doesn't stop at the wound site (not that I have any wound sites)... but starts building little forts in my veins to stop the blood flow in a bad way.

    New Symptom:
    Starting a week ago - I started building several superficial blood clots. Four confirmed in my right bicep, one confirmed in my left bicep, and six to eight 'maybe's' in other places. I'm now on coumadin as well to try to stop the growth. We'll try it for a month or so and then go off and see if I'm ok after that. I did try aspirin on day one of the first suspected clot, but it didn't seem to impact anything other than reduce the visible evidence (swollen, red, warm to the touch area surrounding the lumps).

    So, I'm getting what I believe is accurate and appropriate treatment to 'turn off' the signal to my body to clot right now... I'm more worried about what might have helped flipped the switch in the first place.

    ---------------------------

    It makes sense to me that improving methylation process will improve the processing of purines... and while it seems like treating methylation is causing the gout - the truth is that I probably always would have had gout and being a previously poor methylator just probably prevented it from becoming known. Once that process improved it probably simply exposed another concern that wasn't previously obvious.

    But as best I can figure - being a poor methylator leads to high homocysteine - and that leads to a higher clotting risk. So being a better methylator reduces homocysteine (mine is much lower than it was when I had the pulmonary embolism)... but am I missing something else in the picture?

    My internist (doesn't believe MTHFR even needs treatment) - I had to go back to him because my methylation doctor is 10 hour drive away... and I needed to get diagnosed with the clots to get the coumadin - which required being able to poke my arm and find the lumps under the skin.... he doesn't have any clues other than the fact that .. yes, I'm producing multiple superficial clots. Normally, one at a time would probably get ignored. But five confirmed clots all created in less than a week? With no injury/hormones/iv/travel/or any other risk factor? That's an issue. And while getting multiples within a week without the other factors is exceptionally rare? The standard for treatment is anticoagulants.

    Right now, I'm chosing to hide my head in the sand that multiple superficial clots spread over a period of time is a risk factor often associated with cancer. There's nothing that stands out as a possible risk factor for cancer other than my genes... but no actual symptoms I know of that I should be focusing on to screen for cancer. And, technically, my clots haven't been spread over time. They've all shown up within days of each other (so I'm sticking this back on the book shelf until I break out with another batch of clots - which might make me worry a second time).

    My specialist (treats methylation issues) doesn't think any of my supplements nor treatment would add to my clotting risk. But then again, he missed the gout connection.

    I'm reaching out to others IRL... but I thought I'd ping the great minds on PR... I'm ok with random thoughts/ideas/links to studies...

    I'd appreciate any thoughts pro or con around
    .... my condition and risk factors for clotting
    .... or my treatments/supplements and risk factors for clotting
    .... not sure what else... but any suggestions at all would probably be helpful.
    merylg and whodathunkit like this.
  2. whodathunkit

    whodathunkit Senior Member

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    @PennyIA, I can't comment on your questions but just wanted to say that IMO your brain seems to be comprehending pretty well. :) Good luck with your queries. Hope someone can help. Keep on truckin'!
  3. Lynn_M

    Lynn_M Senior Member

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    PennyIA,
    I'm also MTHFR 1298C +/+, and don't recall reading anything about it contributing to clotting. People with that mutation do have trouble making purines. Your thought process on gout is interesting. However, on one of her call-in shows, Dr. Nancy Mullan says the MTHFR 03 P3P9 is a worse mutation than the C677T mutation. I'm also +/- for that one, but haven't found anything written about it.

    The MTRR genes are involved in recycling B12, so you wouldn't be doing well in that department.

    My methylation genes are more similar to yours than anyone else I've seen. I don't have the MAO, nor the BHMT 2 or 4, and only +/- for BHMT 08 and MTRR A66G, but otherwise we match. I'm on dessicated thyroid too (Naturethroid).
  4. PennyIA

    PennyIA Senior Member

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    I agree. I've actually read that it does NOT impact homocysteine.

    My history is that I was diagnosed with a Pulmonary Embolism first. High Homocysteine levels second. Protein C Deficiency third. MTHFR 1298C +/+ fourth.

    Which surprised me because while I was suspecting MTHFR results, I thought it would be one that leads to high homocysteine. Per Ben Lynch... it doesn't... however, other MTHFR genetics CAN. So, I'm thinking the culprit might have been in the MTRR or MTHFR 03 P3P9... but I can assure you that my homocysteine levels were through the roof the first time I clotted and that methylfolate and methylcobalamin have dropped it to normal range and kept it there.

    I hadn't heard that, but I do know that I've heard repeatedly that 1298C +/+ isn't that bad... and yet, I sure feel like I've been hit by a truck more days than not... and so far the methylation process, issues it causes when it isn't ideal, and the little bit of recovery I've managed while on treatment sure feels like I've got at least one foot on the right path.

    For an update.... I've been on blood thinners now for three days and I haven't been able to detect any new superficial blood clots. And none of the current ones seem to have grown. I've had a lot of 'spots' that have started to hurt (one of them is my neck)... but no bumps - which is good. But I've been really fatigued and had a crash yesterday. Back on my feet today. I'm trying to take it easy - but I think the additional stress just became too much.
  5. PeterPositive

    PeterPositive Senior Member

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    @PennyIA high homocysteine is not all about genetics, it can also be lack of nutritional support due to diet and/or methylation blocks via lack of co-factors and toxicity (e.g. mercury etc...)

    I myself am struggling with moderately high Hcy. I am C677++ so that can explain it, but I haven't been able to fix even after introducing methylfolate (and all the other key elements: B2, B6, B12 etc...)
  6. Valentijn

    Valentijn Activity Level: 3

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    I don't think I ever saw any research showing MTHFR A1298C to have a significant impact by itself. But it does have the rather odd distinction of severely aggravating the effects of other MTHFR mutations.
  7. PeterPositive

    PeterPositive Senior Member

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    In one of the presentations by dr Ben Lynch he showed this table of symptoms for the two main mutations of the MTHFR gene:

    Schermata 2014-05-16 alle 14.15.16.png

    I think he also emphasized that 1298 is less well documented in terms of effects.
    sregan and Gondwanaland like this.
  8. Gondwanaland

    Gondwanaland Senior Member

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    @PeterPositive Could you please post a link to the full dr. Lynch's presentation?

    @PennyIA I am +/- for Factor V Leiden (having had blood clots 3 yrs ago got me started on health researching) and feel that one of the most helpful supplements in my case is the vit E, strongly recommended by both Freddd and dr. Lynch. I don't see it on your supplement list.

    A paleo diet reduced my homocysteine by half (wasn't supplementing then), but didn't help to lower my high uric acid.

    izzy
    PennyIA likes this.
  9. PeterPositive

    PeterPositive Senior Member

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    See here: http://mthfr.net/
    It's in the homepage.

    cheers
  10. Gondwanaland

    Gondwanaland Senior Member

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    Thanks!
  11. PennyIA

    PennyIA Senior Member

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    So, I've been on coumadin now for eight days. My INR on 6/13 was only 1.7... which isn't in the 'normal' range they want it in. 2 to 3 is the 'normal' range. Under 2 means you are still at risk of clotting, over 3 means you are at a higher risk of experiencing a bleeding incident (something you want to avoid while on blood thinners).

    My left arm was especially sore last night - so a little poking and prodding and it looks like there are three new lumps that have formed sometime since Friday night. Admittedly, they were all in places that were 'suspect' before, but didn't have a definitive lump that I could consistently find. So, they had probably started forming before I started coumadin and remaining low on my INR gave them a chance to keep growing. :-(

    I'm calling the doctor, but part of me is thinking that it's just a give it more time scenario. Thankfully my gout-pain is taking a bit of a break right now, so at least it's not one thing on top of the other.
  12. PennyIA

    PennyIA Senior Member

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    I just got back from a second ultrasound - still no DVTs (good news)... but this time I begged her to spend a few minutes on each lump on my left arm to see if she could help confirm or exclude the superficial blood clot theory.

    They aren't superficial blood clots either.

    FWIW - it's not inflammation of the veins nor cysts either.

    But now, they don't have a CLUE what they could be.

    While I've been at this and had a whole lot of other, more urgent symptoms to deal with... I've had a swollen lymph node in my neck for a really long time (like going on a year or two)... which mildly hurt, but didn't seem like anything I needed to drop everything else and deal with, all in all, it didn't bother me much.

    Since all this pain in my arms and legs started, I noticed I have two more swollen, painful lymph nodes just under my jaw line near my ears... but they are obviously just swollen lymph nodes and I figured it might be related to coming down with something.

    But based on the fact that my doctor will probably send me to a dermatologist next (he's really good at picking the wrong next doctor to see, in my humble opinion)... I'm trying to see if I can connect some dots and ask for a slightly more likely place to go.

    When I look at the lymphatic system maps on google, they seem to run along the same lines and places where I have lumps, even though they aren't what I would normally think of as a likely place to have an issue (for example, no pain/nor lumps in my armpits)... the bumps on the inside of my upper arm just above the elbow and right before my bicep. I have four in that place on my right arm, and two in that place on my left arm. I have one that is in the middle of the inside of my upper arm (kind of between the two bigger muscles). One lump is just below the elbow on the outside of my arm (which doesn't fit as closely to the lymphatic system). And then the pains in my legs (no lumps as of yet) run from groin through the inside or outside of my thigh (but not the top nor bottom - if I'm laying on the bed, the pain is on the left side or right side of the leg) and again around the inside of my knee and the back of my calf.

    Which feels like a close fit. But, they didn't show up on the ultrasound either??! Since swollen lymph nodes might fit an autoimmune condition ... it feels like I want to explore it further anyway.

    Now, I'm not against seeing a dermatologist, but do they really focus on things beneath the skin? There are no rashes, there are no raised, visible problems. The lumps are felt under the skin, but not visible to the naked eye. Am I wasting my time with the dermatologist?

    What about something more glandular? Does anyone else get these lumps?

    FWIW - my very first superficial blood clot is in the same place. Was diagnosed because I had a lump near/around the vein after an IV and surgery and my blood clotting disorder (the Protein C Deficiency). It was probably only a few months after that - that I first noticed the swollen lymph node in my neck.
    Valentijn likes this.
  13. ahmo

    ahmo Senior Member

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    @PennyIA I have another path for you to investigate. It might be irrelevant, or it might fit, especially since you've gotten no diagnosis.

    Some months ago I started looking for the cause of recurrent blood blisters in my mouth. It led me to mast cell disorders. As Freddd suggested, it also signified a need to increase Mfolate, and this was the impulse that got me to truly engage with increasing folate/B12 and transforming my life. I went on to conclude that I do, indeed, fall into the spectrum of those w/ Mast Cell Activation Disorders, and have responded favorably to supps for this.
    I'm posting a few paragraphs so you can see if this seems like something you should pursue. BTW, these mast cell issues are linked to adrenals, and stress. cheers, ahmo



    Mastocytosis with Theoharis C. Theoharides, MS, PhD, MD, FAA‬
    http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ

    Also from Mast Cell expert Dr. Theoharides, a huge library of publications at mastcellmaster.com
    whodathunkit likes this.
  14. pela

    pela

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  15. PennyIA

    PennyIA Senior Member

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    Well, got asked to see a dermatologist. He feels they are angiolipomas. 1% of the population gets lipomas (benign tumors that are pain free). Of those 1% of them have pain - which just gets updated to angiolipomas for the naming convention - exactly the same thing, except add pain. Lipomas are nodules of tissue, veins and fatty tissue that forms. And go figure, if you get one angiolipoma, you get a bunch - which does tie into my experience.

    Harmless, which is awesome.

    Painful, not so cool.

    They don't respond to pain killers (I know, I've tried - but dermatologist confirmed).

    They sort-of feel a little better with warm compresses (the only non-surgical suggestion from the doctor).

    The only treatment is surgical removal. Which can increase the risk of getting them again.

    If I don't pursue surgical removal, I can expect MONTHS of pain and if it doesn't get better after several months, then they'd recommend surgery anyway.

    If it gets worse or more inflamed, they might do a biopsy in case it's something else. But they don't think I'm at high risk of the 'something else'.

    Interestingly enough, when I was searching for alternative treatments (just starting my search) one of the supplements is recommended because it stimulates the gall bladder with the reasoning that the gall bladder creates enzymes for breaking down fats and since fats are one of the components that build up into these lipomas. Since my gall bladder was removed about two years ago, I was trying to dig up if there's a relationship between lipomas and gall bladder removals (no luck yet finding it). They don't know what causes them, nor what might cause slightly more risky ones... ? One piece mentions heredity. I don't remember folks in my family mentioning painful lumps that end up benign. A few too many with cancer in their history... but nothing that was like what I'm experiencing.

    Right now I'm researching re-occurance of angiolipomas... it seems like it's a pretty low risk, but I'd rather find more than one undocumented reference for it.

    it also seems like angiolipomas nor lipomas haven't been mentioned before on PR. Sigh... so yet another 'oddity' from me.
  16. ahmo

    ahmo Senior Member

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  17. caledonia

    caledonia

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    You should talk to Sterling Hill from MTHFRsupport regarding the blood clots. She has those, and this is how she got into methylation. Her report has several genes for clotting factors. You can take your same 23andme data and run it through her report.
  18. PennyIA

    PennyIA Senior Member

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    It's been six weeks and the worst of my crash is starting to recede. I'm still getting 'nodules' but the shooting pain that was accompanying the nodules has backed off and the malaise from just sitting upright for more than 10 minutes has backed off. I'm able to be up and moderately active (up and sitting, walking and sitting and mostly just sitting) for several hours a day.

    The dermatologist diagnosed me with angio lipomas. The surgeon he referred me to claimed they were NOT angiolipomas. They aren't blood clots nor anything in the veinous system. Since they aren't bothering me too much right now, I'm just keeping an eye on them.

    They sent me to a rheumatologist who told me that I can't possibly have anything they could help with diagnosing me with. Though they did find low potassium. Since I knew to keep an eye on those test results as I'm trying methylation treatments... I got a prescription for potassium supplements (haven't started them yet). They did recommend that I see a nuerologist; but since I know the new symptoms are NOT typical MS symptoms and I've been told I don't have MS by six other nuerologists, I managed to convince my doctor it's a waste of time and money to pursue that course. If I start getting SERIOUS MS symptoms then I'll reconsider going.

    In the meantime, the doctor FINALLY agreed that he truly thinks I have CFS (I'm in the US, ME as a diagnosis isn't available). BUT that he won't put it in my charts. It can make it difficult for me if I need to go to the ER or deal with any future testing ... but if there are any studies in the future for ME/CFS, he'll be putting my name forth if I can find some for him.

    BUT I did just stumble onto something - that lactic acid build up in muscles can cause nodules. Since one of the recent studies believe they have found that pwME can be found with higher lactic acid build up, I'm wondering if these are tied to my nodules. Of course, finding the correlation could be informative, it doesn't necessarily lead to treatment yet. But it's a possible explanation. I'm just surprised that more pwME don't have lumps if that's the case. Could it be because I'm still a moderate/mild case and more active than the worst patients? I find that I have fewer lumps in the morning (after a long sleep) than I have before I go to bed. And the more I use my muscles (for example, typing this novel), the more lumps I get in the muscles that were active.

    My doctor did prescribe a muscle relaxant which seems to have helped some with the pain - but right now I can only tolerate it at night, and even then on only a quarter dose (smaller doses crumble). I've asked for a lower dose to see if I can take a smaller dose during the day to help me then as well.

    In the meantime, I'm going to be working from home in the near future. It'll be good to have something to look forward to.
    Last edited: Aug 25, 2014
  19. Critterina

    Critterina Senior Member

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    @PennyIA ,

    Wow, that's some good detective work on your part. I know that your metabolism isn't normal, but I'm just thinking that the things that other people do to prevent lactic acid buildup may help you, even if just a little. They are: drink lots of water, breathe deeply, get your magnesium, essential fatty acids, and maybe try baking soda in your bath water (i use 1/2 cup). Maybe if it is lactic acid, you'll see some improvement? Just a thought
  20. PennyIA

    PennyIA Senior Member

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    I am drinking a lot of water, I do relaxation breathing regularly (like a few times an hour)... I'll have to look into essential fatty acids. I do epsom salt baths every other night (because I can't seem to tolerate magnesium in any other form). I might investigate adding baking soda to the bath as well - will just double check how that might impact the epsom salt baths. My magnesium levels are normal right now - but that's only after three years of near-constant epsom salt baths, which has helped tremendously with my chronic pain in my legs.

    Thanks for your input. More to look into, huh? :)

    ETA: http://www.wikihow.com/Take-a-Detox-Bath - well, that didn't take long. I'll probably go from 20 minutes to 40 minutes and add the baking soda to it.
    Last edited: Aug 25, 2014
    Critterina likes this.

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