1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

Skyline's Journal: Progress & Experiments

Discussion in 'General Treatment' started by Skyline, Dec 13, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,152
    Sth Australia
    I had what was definately some kind of detox after starting B12 hydroxy injections in the past.
  2. adreno

    adreno 3% neanderthal

    Messages:
    2,138
    Likes:
    1,181
    Tundras of Europa
  3. adreno

    adreno 3% neanderthal

    Messages:
    2,138
    Likes:
    1,181
    Tundras of Europa
    What do you base these conclusions on? I have seen no such evidence.
  4. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Hi Skyline;
    I do believe that excess folate, all types, can be pro-inflammatory. From my recent experience with increasing the dosage,( I took 2- 3 mg. daily of methylfolate for about 6wks), and incurring migraines, I have concluded this. I have also read about this possiblity.

    I have a particular susceptibility, though, so I believe that my case may not apply to everyone. I'm bringing it up again in case someone else finds that they have a similarity. I've only had 2 blood serum folate measurements done. One was in early 2011, and another in early 2012. ( I realize that serum folate titers are non-specific.) The first result was that folate was above measurable range, too high. The second result was high normal.

    I had been taking an average of 5mgs. methylcobalamin daily, ( sometimes less), since late 2007. I had also been taking an average of 400-600 mcg. folate daily. ( various types)

    In my case, it does appear that I had a folate trap, that was released with mb12 supplementation. ( Looks like it took some years to repair.)

    Now it seems that I may have difficulty metabolizing folate,( all types), and that I should be much more careful with my intake of them. ( It's probably genetic, and I will also pursue this.) I have cancer in my family, like many, and I'm waiting for the results from a test that may require me to get an MRI, tests, etc.

    I don't want to discourage the use of folate to anyone here, because most of us are finding that we need it in higher amounts, active forms, etc. I do want to encourage folks to use caution, and testing, hopefully to insure that you are doing what is best for your own health.

    Sorry, I hope I haven't dropped a stink bomb here. I do strongly support Skyline's careful methods. I hope to be influenced. ( I have some hindsight to examine.)
    merylg and taniaaust1 like this.
  5. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    Thanks for all the pointers, questions and encouragement guys. I've just flown out to see my parents for xmas so I'm going to be quiet for a few days while doing family stuff - and I'll follow up on everything when I'm past that.

    Progress/ Status - Day 9 Wednesday 19th December of Active B12:
    Energy: 10
    Headaches: 6
    Neuropathy: 7
    Mood: 9

    I was flying yesterday - longhaul - which I typically get a headache from, but this time was actually a lot more reduced and I think it was more due to not sleeping (5 hours night before flying, and nearly 24 hours without sleep for flight/ arrival). Sleep is my weaker spot, if I don't get it symptoms tend to come up more. I'm pretty impressed with how I faired on this trip and today Thursday am going to go out for a full day shopping/ seeing friends (that's a bit of a challenge, but right now I feel it up to it - see how it goes).
    Crux likes this.
  6. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    I'm back after a 3 week vacation across Europe - it was ambitious, and I had a couple of mini-crashes a long the way, but I was also able to walk for up to 8 hours some days at other times. At the end I feel I've gone backwards a bit - and from now on I'm going to be limiting exercise/ activity until thing get better.

    Test results received: Dr Yasko's UAA, UTM and UEE and feedback on metametrix GI profile

    This has uncovered a lot of issues with my gut, absorption, PH, and with methylation. It appears none of the B12 I'm taking is getting into the cells (zero cobalt on UTM, high serum B12, high methylhistidine on UAA).
    This is probably 'lithium dumping' (Slightly higher excretion of lithium on UEE) and low lithium (have to do Hair Metals Test to verify).

    So as a result I've stopped the methylation protocol I was on until I can verify/ fix the B12 transport issue - hopefully Lithium is the fix.

    I am working through all the notes on my tests and pulling together a new strategy - I have also read The chronic Fatigue Syndrome book: http://www.amazon.com/Chronic-Fatig...7214&sr=8-1&keywords=chronic fatigue syndrome

    I highly recommend it - it is a bit overwhelming, but has given me a lot more structure to thinking and so many AH-HA moments about the evolution of my symptoms. It all makes a lot more sense - I'd say the first step anyone should take is to read this book in fact as it stays objective covering all treatments / ideas behind causes. Great place to start.
  7. adreno

    adreno 3% neanderthal

    Messages:
    2,138
    Likes:
    1,181
    Tundras of Europa
    Wow, that book looks really comprehensive. It's only available in Kindle edition?

    If you can walk up to 8 hours a day, you are doing pretty well. I can probably manage an hour.
  8. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
  9. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    adreno it is only available on kindle as far as I know. But don't let that stop you, you don't need a kindle to view it.

    You can read kindle now on iPad, desktop PC or Mac, iPhone and maybe others. I read mine on iPad these days. On each platform you just install the kindle app, link it to your amazon account and you can read any books you've bought.
  10. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    Crux I started with Doctor's Best Lithium Orotate 2.5mg (half a pill) every morning. Since I started I seem to be getting gains daily - but it's a little early to tell yet. Yasko says you can even do lower, at 1.25mg/ day to get the benefits while avoiding any potential of moving your body levels into any toxicity range.

    Got my 23andme results back and put them through geneticgenie.org. Working through them with heartfixer, some other resources and my biochemical results to date to get a picture of what I'm dealing with.

    Two tests ordered/ waiting for results: Yasko's methylation panel (genetic) and Yasko Hair Metals Test (Doctor's Data).
    Crux likes this.
  11. Crux

    Crux Senior Member

    Messages:
    577
    Likes:
    201
    USA
    Skyline
    Hi, Thanks for the details about the brand, dosage, and Yasko information.
    I'm going to try this procedure.
    ( I did try some of a type I already have, and felt energetic from it. I took 5mgs. one day and 9 mgs. another. It looks like the much lower dosage would be better.)

    Thank You.
  12. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    Thanks skyline - very informative (especially here in the UK with nothing) as you work through it all.
  13. xks201

    xks201 Senior Member

    Messages:
    600
    Likes:
    177
    I have elevated B12 too. Methylmalonic (sp?) acid is normal. I've seen this a lot in CFS patients and am still wondering what is going on here.
  14. Creekee

    Creekee Senior Member

    Messages:
    143
    Likes:
    111
    Arizona
    Skyline, thanks for the update. And glad you survived the trip so well. :)

    Very interesting stuff. I've been trying to nail down cause of skyhigh serum B12 and folate. Will download the book you recommend. 'Preciate the scoop!
  15. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    I seem to have become stable at a new level of operation - no headaches, no muscle aches, neuropathy much better.

    The main outstanding symptoms are:
    A) Fingers still numb (some days much better)
    B) Legs stiff / especially in knees

    I am waiting for a new battery of tests to come in before I change anything big in what I am doing. These are:
    - Yasko's methylation panel (genetic)
    - Yasko Hair Metals Test (Doctor's Data).
    - Methylation Panel (Health Diagnostics) -> I saw this as essential to understand the methylation issue properly (combined with the DNA data I will create a map of what I'm dealing with).
    - Ubiome - I also signed up to get my biome profile in case anything interesting/ more clues come up there.

    In the mean time I am getting a monthly battery of blood tests locally in Bangkok to track for abnormalities and find any minor things I can fix. The things that are notable from this month's tests or are differentials are:

    The GOOD
    1. Homocysteine dropped from last month 9.68 umol/l to 7.1 umol/l (below 7 is supposedly ideal and above 9 becomes risky).
    2. hs-CRP (0.2) - this has shown a steady decrease in inflammation from a peak last August (1.8). The last month's drop from 0.34 could be related to homocysteine drop above.
    The BAD
    1. On CBC
    - Low WBC (4460 - bottom of reference range is 5000)

    - Lymphocytsosis - high lymphocytes (40) - top of reference range is 35

    2. Liver function test
    - Slightly low total protein (6.6)

    4. Cholesterol
    LDL (151) - Not worried about this
    HDL (42) - dropped from 59 in one month - and the first time I've had below 50 in 5 years (I'm not sure what happened here - reading around)

    5. TSH (1.5) - should be below 1 ideally (could be related to deficiencies in selenium, and copper showing up on my UEE)

    This month I'm going to work on the TSH, HDL and low WBC. I had a low WBC last year and raised it over a month to mid-range - so I'll follow that again and see if it fixes it. I'm assuming this is just due to the derangement of the immune system that CFS causes. I have not been sick since beginning of january and feel fine.

    My idea/ approach on this is that fixing small things in the body releases more resources to help fix the overall condition. So when I can improve something (e.g. thyroid) which most people have issues with anyway - it's worth it, to release resources to tackle CFS and overcome it.

    I'm also introducing a little bit of very graduated physical effort (which used to lay me out). I started with 1 push up per day. Am now on 2 push ups. I will continue like this keeping at a level which feels like it is just under exertion - as I have been reading about how de-conditioning can impact negatively immune system in general and I have lost a lot of muscle (~5kg). Staying under exertion so far I have had no negative drawback so I will keep at this.

    The last couple of weeks I have been able to work full days without a problem - I'm actually gunning away. So things are going well. It's a bit frustrating having to wait so long for test results.
    taniaaust1 and merylg like this.
  16. place

    place Be Strong!

    Messages:
    278
    Likes:
    53
    US
    I have low WBC how did you raise your levels.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,414
    Likes:
    4,152
    Sth Australia
    Since I last posted on your thread (Dec?)... I went and saw a MTHFR specialist and found out my last specialist had put me on the wrong supplements for the MTHFR. The hydroxy injections I was having twice a week.. were no good for me to be taking.. my body couldnt use well (hence why they'd only helped my memory a little and nothing else).

    Im now on methyl B12 and the active form of folate and are having some very good improvement in MANY of my symptoms. If you have a MTHFR polymorphism like I think you may do.. those with this tend to need the methyl B12 (according to my specialist.. well at least for the first couple of years while the body is teaching itself how to use the pathway that the active folate form will come in on).

    Looking forward to hearing about your results of your tests.
  18. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    place I am working on areas that have shown up as slight or higher deficiencies on tests that are related to the immune system. For me this is:

    1. Increasing selenium (I have been bordering
    - 5 egg yolks/day
    - Fish / shellfish at 1 meal most days
    - 2 brazil nuts/ day
    Note: The most bioactive form of selenium is not present in plants or supplements. So eggs/ seafood are most important.

    2. Increasing HDL (HDL plays a role in the immune system)
    - Grass fed Ghee / coconut oil daily
    - Exercise (complete lack of exercise - staying in bed, decreases HDL). I'm walking every day and doing minimum resistance work (e.g. 1 push up or whatever i feel is under exertion). Last summer I was actually doing better and was doing dead lifts without significant PEM.

    The other two things I'm doing:
    3. Grass fed whey (I am not sure about this, but it seemed to work last summer - so i'm testing it again). I use "upgraded whey", which advertises that it contains more IGGs, lactoferrins, and serum albumin to help with immune system and GI balance. Also purported to boost glutathione.

    4. Vitamin C/ Zinc: I'm taking vitamin C 1000mg/ day, and i take more if i have lower energy - and sometimes the liposomal Vitamin C if I'm having an off day (that makes a big difference for me). I'm ok for zinc - so I just take that once or twice per week (50mg). I don't think this makes or breaks it.
  19. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    taniaaust1 really glad to hear you have been making more progress! Congrats.

    Unfortunately (funny to say this) I'm not MTHFR - I think it's the better type to have as you have a more straightforward approach to fixing things with most people - provided you don't have other SNPs.

    So far I think my main issues are CBS, MTRR and SHMT. The full in my sig.

    The active folate/ methyl wasn't working for me - it seems to be a 'lithium' transport problem for me as I mentioned earlier. I have tested with 1.25mg to 2.5mg of lithium / day and a thorne B vitamin complex - this has relieved a lot of my neuropathy but it's a balance.

    For instance, I crashed a couple of days ago potentially due to overdoing detox. I'm not entirely sure of the mechanism but it seemed to be triggered by Dark Chocolate - I've experienced it many times now, and researched a lot but haven't come up with a clear idea as to why. There are rumors, but nothing concrete.
    taniaaust1 likes this.
  20. Skyline

    Skyline Senior Member

    Messages:
    125
    Likes:
    61
    Bangkok, Thailand
    Update on my experience with Lithium

    Right now I'm taking 1.5mg to 2.5mg / day lithium orotate (quarter to half tablet) which has stabilized me.

    However, I get my blood lipids and WBC taken every month and there were some concerning changes this month (around 3 weeks on lithium):
    1. HDL dropped from 60 to 42
    2. LDL increased from 130 to 150 (not too worried about this)
    3. WBC dropped to just below reference range and lymphocytes are above reference range as proportion.

    Reading around in the research it seems that lithium causes these types of changes in lipid metabolism - but that's as far as I've got so far. Still I'm surprised that I have them (if that's what i'm seeing, i'll need next month's test results to confirm the trend) as I'm taking such a small dose of lithium compared to studies (typically on lithium used in bipolar treatment which is at much higher dose).

    Questions I have are:
    1. Could lithium cause changes in WBC?
    2. If I am "lithium dumping" is my body doing this in order to keep lipids / immune system in balance because of some other issue/ imbalance? Lipids play a role in the immune system, so they could just be the downstream impact of the effect of taking lithium.
    helen1 and taniaaust1 like this.

See more popular forum discussions.

Share This Page