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ME/CFS and the Magic of the Canine Factor
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Skyline's Journal: Progress & Experiments

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

  1. Skyline

    Skyline Senior Member

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    An increasing symptom over the last few months has been muscle twitches - mostly in my legs. These are now virtually constant throughout the day, before this it was episodic and varied on placement in the body. About 7 weeks ago it became near constant.

    Interestingly about 9 months to 12 months before I became ill I had an eye twitch that lasted for a few weeks - very unusual. This occurred while I was staying in a water damaged house - where there was visible mold. This 'story fact' fits with my CIRS diagnosis (chronic inflammatory response syndrome). I am planning to fly to the U.S. to get the whole battery of shoemaker tests later this week to get more data on that.

  2. Valentijn

    Valentijn Activity Level: 3

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    Supplementing a good magnesium keeps most of my twitching away.
  3. Skyline

    Skyline Senior Member

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    Hey Valentijn - thanks. Which supplements are you using?

    I've been using Magnesium oil - as I do know that this is an issue and my Myhill tests came back with that issue - but potentially this isn't sufficient, or I'm not lathering on enough. Thought: I was supplementing with Magnesium Ascorbate, and it's possible it receded a little at the peak of it's use - I'm definitely more aware of it since the mag ascorb ran out.
  4. Valentijn

    Valentijn Activity Level: 3

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    Jarrow's Magnesium Optimizer mostly, but anything other than magnesium oxide and chelated magnesium should work.
  5. Lotus97

    Lotus97 Senior Member

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    Someone started a thread in the general forums a few months ago saying how they made a big improvement after moving out of mold-infested place.
    abporter likes this.
  6. Lotus97

    Lotus97 Senior Member

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    Coffee and chocolate are also high in thiols
    http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/
  7. Skyline

    Skyline Senior Member

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    Update: I put myself on magnesium oil several times ago and liberal use of magnesium gluconate (standard GNC tabs).

    Took a few days to kick in and now the muscle twitches have been reduced by around 95%, a few remaining which I figure will disappear once i've built the magnesium up more.
  8. Skyline

    Skyline Senior Member

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    Test result improvement: I did a second VCS (Visual Contrast Sensitivity) test which came back at 62, and improvement from 48. Higher (more sensitive) the better. Most of the improvement was in the left/ weaker eye, which digging around in some research seems to be typical. The weaker eye sees the greatest variance where it comes to toxin exposures.

    So that's some good news.

    Changes: Taking creatine daily to help with ammonia and take the load off of methylation, saving SAMe for other purposes. I do much better on SAMe since I started taking it on and off last December. It has been a key component of holding my symptoms at bay, in particular headaches. The creatine has made legs noticeably stronger where I had felt they were getting progressively weaker.
  9. Skyline

    Skyline Senior Member

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    Am modifying my magnesium protocol as follows:
    1. Transdermal: Magnesium oil - Health and Wisdom.
    2. Magnesium Malate -> promotes energy/ ATP production (Malic Acid), acid production also for digestive support.
    3. Magnesium Ascorbate -> Vitamin C to promote daily bowel movement and general vit C support.

    I'm looking into MagneGel vs. the Health and Wisdom Transdermal oil to see if the gel has any studies or evidence to support it being more effective.

    The GNC supplements I got here in Mexico (only ones available) are mostly Magnesium Oxide and thus very poorly absorbed. Based on what I've bought or checked out in past with them GNC nearly always has the worst formulas - I guess they must be very economics driven.
    merylg likes this.
  10. Skyline

    Skyline Senior Member

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    Update update... had some fun down here.

    1. Mold in apartment *crash*: Had a mini crash about a week ago - legs really declined, lots of brain symptoms, and then discovered that some mold had grown in our laundry room here (recent, potentially because of a 2 week rain storm that occurred couple of month's back). Temporary fix: Once I found the mold I avoided it like the plague, spent most of the time on the terrace at home and a lot of time working at the beach - rapid recovery ensued.
    2. Routine/ environment change: Have now moved out into a mold free apartment where am also able to keep terrace door's open 24/7 and am continuing to spend a lot of time working at the beach in the fresh air. Bought an HEPA air purifier which I keep next to my bed and turn on while sleeping. Protecting sleep is really important because it's your 'recovery' time. I feel that the new 'beach' part of my daily routine is going to take me forward a lot faster. Day by day i'm feeling stronger and it's a great way to work, in front of the caribbean with fresh air blowing into my face all day.
    3. More Magnesium: Have added in magnesium threonate that passes the brain barrier - waiting to see what results are.
    4. Detox: Haved added in some minerals to support greater chelation of metals including fulvic acid. Am also looking into Chelex as a good addition to support ongoing detox.
    5. Shoemaker Testing: Have the requisition forms now and will be flying to Baltimore to get all the labs done over the next week.

    I also had the opportunity to test PEM this last week when i was late for a meeting. I did a fast walk jog back to the apartment with no noticeable PEM afterwards except real muscle soreness - like the type you get after exercise normally - the next day. Ages since I've had that nice muscle soreness after exercise - I was happy about it.

    Overall, feeling very positive, that the pieces are coming together and I'm now really on my way out.
    merylg likes this.
  11. Skyline

    Skyline Senior Member

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    Things continue to improve. These are the goings on.

    1. Ferritin levels: These are up at 220 ng/ml on latest blood work (should be around 60ng/ml optimally and less than 100ng/ml. Surplus of Iron contributes to oxidization and can support pathogenic growth, so it's important to keep this down. This can be done by:
    A) Donating blood: This is the easiest way to lower iron ferritin levels. Going a few times over a couple of months gets most people's levels down. However, we have CFS, so we can't give/ donate blood. You can get a prescription from an understanding doctor in the know to do it for phlebotomy purposes. Not an option in my case in Mexico.
    B) IP6 (Inositol Hexaphosphate) has been shown to lower iron levels safely. I start mine today, and will track progress in bloodwork at least monthly.
    C) Lactoferrin: Does not chelate/ reduce body store/ burden, but does help to sequester it from pathogens in favor of your body's process using it.

    I'm doing both B and C. IP6 I started today, Lactoferrin I've been on for a couple of months already.

    2. Exercise and rehabilitation!
    Since i've been PEM free for a while, even with accidental tests of more physical exertion, I felt it was time to try a little gym. I mean a little, I'm taking this step by step carefully.

    Last Monday I went to the gym and did some light body weight exercises: plank, squat, lunge. About 5 minutes to test the water - no PEM. I've also run up the stairs in my apartment a couple of times - before CFS this was normal for me, I hated wasting time so used to just run places (not normal i know, but hey...). So I've let myself slide a little back into that behavior. No PEM.

    I have had sore muscles (the normal kind after a muscle workout) - as you can imagine, that kinda feels good. Also a slightly sore knee on one leg, I think that's an old injury playing up a bit - perhaps because of the onslaught of inflammation it's been through over the last year. It was completely healed before CFS.

    So I'm going to continue with careful introduction of 'weight only' exercises.

    3. Heart Rate (HR) and HRV (Heart Rate Variability) Project
    Given the research on HRV and CFS, and some of Dave Asprey's mateiral on using HRV to lower stress it's something I've decided to run a project on. I wasn't happy with the Basis watch for HR (which turns out to be extremely inaccurate, and not useful for any HRV interpretation). So I bought a Polar H7 chest strap that is accurate, arrived today.
    I'll be using this to track HRV while sleeping and to establish a baseline to follow over time and assess my recovery from CFS as it progresses. It should be a useful biomarker - and will help also to tell me to back off any rehabilitation - if I push it too fast.

    I'm also meditating daily immediately before sleep with the Emwave2 HRV tracker, which helps to me to focus on the right state. Finding this is useful to promote time to sleep and length of sleep. More tracking to do before I'm sure about that, one week's subjective feeling and sleep tracking with an accelerometer app are what I base that on.

    4. Other Upgrades to improve sleep
    I received these today and wear them from sundown to block out blue light, and therefore ensure i'm not inhibiting melatonin via 'blue screens' like computers, ipads and TV: http://www.amazon.com/Uvex-S1933X-Eyewear-SCT-Orange-Anti-Fog/dp/B000USRG90

    I also take 500mg of GABA and 400 to 800mg of Magnesium malate immediately before sleep to help get me in the right state of mind (AKA relaxed). Took this from Dave Asprey's blog post on sleep and biochemicals.
    abporter, merylg and Crux like this.
  12. Skyline

    Skyline Senior Member

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    Been a busy week! I found out about Dave Asprey's Bulletproof Life workshop in L.A. and how you could apply to take part in it via video application. It was an opportunity I didn't want to miss to learn more details of mycotoxins, improving sleep, detox etc. from Dave who I've already learned a lot from that has been very helpful (especially the mycotoxins, mold, coffee and chocolate link).

    This was recorded on 13th August in about an hour (although it's only 90 seconds long) and then the final touches done today by a friend who helped with production.

    Please check it out on youtube directly by clicking here, and 'like' and comment the video on youtube - it will help my application to get accepted.



    And, this one's more for fun - I've been unable to drink coffee or eat chocalate at all the last month (immediate stomach ache, and post symptoms). I think this is because as I detox from mycotoxins, my body is getting more sensitive - an effect Lisa and Erik and Dave Asprey have all noted. So I was really happy to receive a shipment of Dave's mycotoxin free coffee and chocolate this week - it's made my week! yeah, coffee and chocolate always were a bit of an addiction for me.

    Making mycotoxin gourmet coffee in Mexico --> http://instagram.com/p/dCS5SKO8XU/
    merylg likes this.
  13. Skyline

    Skyline Senior Member

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    Status: Doing well, managed a trip across San Francisco reasonably well - including climbing some of San Francisco's hills. Sleep is better - around 7 to 7.5 hours / nights. Headaches virtually non existent, couple of sparks here and there.

    Current projects....

    1. Shoemaker protocol tests: I had these done last week in the U.S. It was an amazing bureaucratic battle and expensive to get these done, so i'm glad it's out of the way. Results back and discussion with my physician in 3 to 4 weeks.

    2. Dave Asprey Bulletproof Life: Lots of useful information to lower stressors in general and Dave gave me some specific advice on recovering from mold/ CFS (as he had the same condition). That's very motivatory in itself as Dave has mountains of energy etc - clearly buried the CFS monster very deep and gone forever from his life. It will take me a couple of weeks I think to digest the information, structure it and begin applying it all. Some of the treatments he advised me on I've started researching include rectal ozone therapy and EPO. Will report back with an update on all this when I've got it all together.

    3. Sleep: I've been wearing the UV goggles pretty diligently. They do seem to have a big impact, which I believe is suppressing melatonin inhibition by light. My problem has been waking up too early (e.g. 2, 3 or 4 hours after going to bed). I would feel super alert when I woke up like morning. AKA no melatonin making me feel drowsy. Now, if i do wake up during the night I feel drowsy and go back to sleep.

    4. Mold Avoidance: Many issues here. Around 2 weeks ago I started getting headaches in the night and was unable to sleep. What would you know I found mold in our air conditioning system here. Got it treated and removed and the night headaches stopped.

    While I was in San Francisco, I seemed much better overall - just the fact that I did everything I was doing without much symptoms was pretty incredible. I went shopping after long days in the studio, and not much problems at all - pretty tired, but that was it really. So I'm thinking that in San Francisco I was staying in a very clean apartment, and that my apartment here is not clean - re. the mold incident.

    Today, now back in Mexico, I'm looking for a new apartment - can't take the risk. Looking for the newest building possible and that has been built well - the one I'm in while very fancy has noticeable structural issues - which is where the problem would be.

    5. HRV project: Have not had time to get deeper into this but I did a lot of tracking the week before I went to the U.S. So I started to see patterns.
    A. I was less stressed in the U.S. when I spot tested - markedly. Is this because of mold issues where I live in Mexico?
    B. Lying down lowers stress for me (assumed 'low blood volume' issue as dave pointed out on creativelive event)
    C. When tracking all night, my stress would drop then rise two hours later - waking me up. So I would be at max stress level while sleeping. Could that again be mold in apartment issue?

    And this is a very speculatory but I had some real gut issues the week I was testing HRV while I slept. I looked into a few things and there was one research project looking at mold response to EMW (ElectroMagnetic Waves) or EMR (ElectroMagnetic Radiation). In that project, not a published paper, they found that exposure to wifi signals (a form of EMR) stimulated mold to produce 600 times more mycotoxins. The idea is that mold believes it is being attacked and responds in kind. It's an interesting theory, and convinced me to limit my 24 hour chest strap use because of its bluetooth smart (low energy, but still constant thoughout day). My gut issues subsided, and seem to have a correlation. I may try 24 hour again to verify. This is assuming I still have a fair amount of mold inside me.

    This would make sense in terms of how mold's impact on us has been getting worse - perhaps mold wasn't such an issue before all the wifi and cellular towers appeared, and part of the locations effect may be just less EMR - thus less mycotoxins in the air. Would love someone to do a research project on this, in the mean time I'm going to experiment with reducing EMR exposure.

    6. Anti-fungal environment: I've also been looking into increasing the anti-fungal environment for my body and took some of Dave Asprey's pointers on this. Have some supplements arriving this week for it, to upgrade that defense system. I believe in the work on the terrain analogy, so that the pathogens are in an environment which is not conducive to them. So that's another new dimension I'm bringing to the battle.
  14. Skyline

    Skyline Senior Member

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  15. Skyline

    Skyline Senior Member

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    Sleep: The UV goggles have been outstanding for me. Takes a little bit of habit creating to reach for them as soon as dusk comes around, but apart from that it's easy and kind of pleasant. Now I'm getting 7 hours sleep in duration without any trouble - I've kicked the melatonin support I had been using completely, and the last week forgot to take the other supplements I was using as they simply weren't needed. Previously I was suffering a lot with sleep, sometimes getting 2 hours - always less than 6. The other factor I think has made the difference is moving apartments to a clean mold free one. There has been a noticeable improvement since, it's been 5 days. More details on apartment below.

    Sleep Stage II: Now the harder part starts. Looking into the quality of the sleep. First I'm going to see if there is anything better than the sleep cycle iphone app available - i believe there isn't - for tracking, then i'll get down to getting a baseline and seeing if any supplements or other things help the quality.

    Avoiding Mold: As I said I was pretty convinced there was a mold issue when i compared symptoms in the different places I had been staying (san francisco apartment vs. mexico). So I moved when I got back to the cleanest apartment I could find. It was a stressful process - it's like you're making this bet on a new apartment - will it make the difference? Will it not? It's difficult to make the right decision and of course you're locked in afterwards for at least a month or you're going to have difficulty renegotiating etc.

    I'm happy to say that the whole process did work out with a positive result. My HRV is much improved in the new apartment - in the old one it was very difficult to get out of the highest stress zone. Now I can get it into the lowest stress zone when I make an effort. Like night and day and quite amazing to see the difference.

    I wish there was some real convenient way to assess mold in the environment, it would make a big difference - probably the biggest for those who have a mold triggered form of CFS.

    Iron: This is an excellent presentation from Chris Kresser on Iron Overload. If you have raised levels like me (very common in CFS) and want to do something about it, it's the best resource I've found so far. He covers the most important stuff - correct biomarkers to track and safe treatment approaches.
  16. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    So! It is gonna be time for me to try these glasses! ;)
  17. Skyline

    Skyline Senior Member

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    HRV: I have been using HRV taken every morning to monitor my response to exertion, stressors and how it relates to my symptoms. I had a bad energy day on Saturday - worst one in a while that was linked to getting a little too much sun (stressor) the day before. My HRV crashed that morning, and since then has steadily built up every day. Yesterday did a lot of walking and it plateaued. So today I'm resting up to see if I can boost it higher. It seems that waking HRV directly correlates with my energy levels so far. This could turn out to be a good tool for pacing - showing how your capacity for 'stressors' is growing.
  18. Skyline

    Skyline Senior Member

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    I've been meaning to do my accounts and keep them updated to keep a handle on the cost of this whole health recovery.

    Finally got it done today, and as expected the number is relatively large at ~ $US 20,000 to date.

    See the chart and details here: http://biohacked.net/health-investment/
  19. Skyline

    Skyline Senior Member

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    It's 4:49am in Mexico right now and I've just reached a new milestone in my recovery. My VCS test score which I've been tracking since April has normalized indicating that I have cleared most of the biotoxins (mold/ mycotoxins) from my system.

    I'll retest in a few weeks to be sure, also because it was just over the borderline of testing negative for biotoxins. Nonetheless I'm happy that this is a solid indication that I've A) got better at identifying and avoiding mold exposure B) Made good progress with cholestyramine (the drug that binds and draws out the toxins).

    The chart shows a slight acceleration of recovery over the last month.
    [​IMG]
  20. Skyline

    Skyline Senior Member

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    It's been a fun month, with a problem and then a sharp recovery. I'm doing better this last week than I've ever been since May 2012 when this all started for me. Great energy - no headaches, symptoms pretty much gone except the leg twitching and I'm not pushing the exercise / activity yet. I think PEM is probably still a problem - but I'm walking around, working etc fine.

    The problem: So i moved into a new place around a month ago, just after my last post. And suddenly everything started going worse. I suspected the apartment to be mold contaminated and found a water stain on one ceiling + the landlord told me there had been previous water damage. Then I also discovered my bed was literally 20 metres from a cell telephone tower. I was in a lot of pain at night, worse than ever so I couldn't sleep.

    I looked up Dr. Klinghardt's work with mycotoxins/ mold and microwaves/ EMF and made the connection. Moved to a hotel to recover the 3rd day and everything got better over a 24 hour period with some sharp detox (worst headaches I'd had in a while). Then we found the cleanest apartment we could and I've been on the up since then.

    I'm *extremely positive* about fixing this for good and burying it so it's never a problem for me again. Going to keep up all the testing, studying and so on until everything in my biology is normalized. I imagine i'll do that for the rest of my life.

    Awaiting more Shoemaker labs (TGF beta and co) that had done last week. Looking forward to see how they are trending.

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