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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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    I'm doing better since my last posts. I went through a big period of detox for about 3 weeks, where I had a lot of symptoms come back in full force and was pretty much crushed (not able to do anything). This included a rash over most of my upper body. My Liver ALTs have also climbed. I believe it was detox because of these two points and pulled back on some things I was doing, which is when relief came.

    I'm doing more research to see how I can approach this smarter reducing the toxin load and supporting liver through the process. I'm also concerned about protecting brain and other body areas.

    So, this is what I've been working on lately:
    1. Mitochondria: Been reading Dr. Sarah Myhill's materials and studies, and am awaiting the results of her Mitochondrial Functional profile. I also started PQQ supplementation to help regenerate mitochondria and have nailed down pacing harder to avoid mitochondrial energy crashes and the related damage. This involves taking more breaks, changing type of activity (e.g. visual to audio when eyes get slightly blurry) to avoid any fatigue signals, taking a sleep nap in afternoon daily to rest all areas of body.
    2. General Detoxification: Am reading through materials from Andy Cutler, Gary Gordon and whatever else I can get my hands on. Have been making use of activated charcoal supplementation, and stopped metal chelators until I finish my research - concerned about displacing metals to brain and heart. I've ordered a portable Infra Red Sauna that should arrive in a few days and will use that daily to promote detox. Myhill has seen very good results with detox via this method, in one case a daily sauna reduced toxin levels across the board to 25% in 3 weeks of daily sauna with one patient. An interesting book that has been helpful as an overview is The Wellness Project by Roy Mankowitz. You can read my review of it on the page - author "biohacked".
    3. Mycotoxins: Read through Ritchie Shoemaker's work and did the Visual Contrast Sensitivity test which I came back positive for. My story also potentially fits with his work, as I read through his book Surviving Mold I noticed that some case studies has some symptoms that I have but that I haven't seen commonly reported by others with CFS. I booked an appointment with Dr. Scott McMahon this Monday who is one of two physicians certified by Shoemaker (he no longer sees patients, now that he is focusing on research). I have already implemented some detoxification targeting mycotoxins (eliminating potential food sources, planning a location to move to away from their influence by end of this month, doing a detox night using activated charcoal and liver flushes to eliminate some of the toxins combined with cholesterol in the gut). I have noticed that I clearly feel better after the detox nights as if a load of toxin has been removed (just anecdotal of course, I need tests to back any of this up).
    4. More Tracking Data: I received my Basis watch about a week ago which tracks heart rate, stress, temperature, and activity levels 24/7. I've noticed some 'interesting' trends in the data so far, but need to research more and get more data to see if this is useful (particularly at night while sleeping).
    helen1 likes this.
  2. Skyline

    Skyline Senior Member

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  3. adreno

    adreno 3% neanderthal

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  4. Lotus97

    Lotus97 Senior Member

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    I'm not trying to convince you to take glutathione, but if you take it via sublingual, transdermal, or suppository that would bypass the liver. At least on the first pass. Glutathione sublinguals are 50 mg (maybe 100 mg) so not much would be taken orally.

    It seems some other people have had problems with headaches and other issues from whey. Do you think it's from the sulfur or from the glutathione? Actually, I think some people might have problems from the whey due to its immune boosting effects (lactoferrin, albumin, immunoglobulins).
    I'm concerned about that too. Everyone seems to think their methods are the best and that all the other methods are ineffective at best and dangerous at worse. It's hard to know what to think. I'm hoping my health issues are due mainly to Lyme (and oxidative stress) rather than also metals because I really don't feel like dealing with that too.
    I bought PQQ a few months ago when there was a big sale at Swanson's, but I've yet to try it. Also have an unopened bottle of citicoline...I have trouble limiting my activities because I tend to be more wired than tired. So I end up spending too much time at the computer rather than bed, but then I get more wired when I spend too much time at the computer.
  5. Lotus97

    Lotus97 Senior Member

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    Skyline
    I stumbled across a post about someone's experience with whey. This person seems to have chosen aspects of both Rich's and Freddd's protocol that worked and discarded what didn't work (I'm not necessarily saying that Rich recommends whey, but he doesn't have a strong opinion against it like Freddd).
  6. Lotus97

    Lotus97 Senior Member

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    On that subject, Freddd seems to be of a (slightly) different opinion after adding B2 recently:
    http://forums.phoenixrising.me/inde...kalemia-and-methylfolate-insufficiency.22968/
    This acts like a startup from hell, overdoing this most extremely. So the question that comes up, is THIS effect then the actual result of “overmethylation” or what should it be called? Yes, I know, it is once again “DETOX”, and once again that is meaningless.. Are B2-B3 somehow the accelerators? Balance appears to be somehow the key to this all.
  7. Skyline

    Skyline Senior Member

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    Hit Lotus97, thanks for posting these.

    I think my whey issues are related to CBS/ sulphite intoxication (i.e. headaches and head symptoms are the most noticeable). Because of my COMT +/- I use AdB12 and HydroxyB12 - that has cut out the over stimulation issue for me - sleep better, not wired, anxious etc. MB12 was not easy for me.

    I would agree that balance and not causing new imbalances is key. So for me testing is the key to constantly assess where things are at. I do have a lot less symptoms now that I'm detoxing with other tools as well as methylation (clays, other supplements and soon sauna). It's too early to call that out yet though - need more time/ data to see the results.
  8. Lotus97

    Lotus97 Senior Member

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    I didn't realize you had switched to hydroxocobalamin. Earlier you mentioned "I'm titrating based on feeling" so I assumed you were sticking to the higher doses. What did you decide about your methylfolate dose? Also, have you tried taking niacinamide? Besides speeding up COMT which might be useful (depending on the dose), it also inhibits NF-kB and TNF-alpha.
    Caledonia said she was able to tolerate higher doses once she dealt with her CBS issues. As far as other toxins go, that's sort of a wild card because it's hard for a person to access their toxic burden. I guess there are some tests and you can also go by how you feel, but my guess is there's still a lot of unknowns.
    I was speaking to someone with neuropathy who was taking high doses of methylcobalamin (not sure about methylfolate) and they said something similar:
    I tried [taking higher doses] and having stopped taking it I then developed minor cheilitis for the first time, so had to start taking B12 again. I think my body got used to having large amounts of something like that, and that upset a balance somewhere.
  9. Skyline

    Skyline Senior Member

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    Hey Lotus97,

    I had started titrating, but later pulled back as that wasn't working for me. The titrating was basically the first thing I did and was based on what I had read of Fredd's work, but I pretty quickly decided that using his material was just going to get me into trouble - no testing or process, a lot of new symptoms etc.

    For the direct methylation stuff I now take:
    B complex Thorne Research #12
    - This contains the methyltetrahydrofolate, which seems to be the best and doesn't give me any symptoms (some Ben Lynch commentary. Also Calcium Folinate.
    - 300 mcg methylcobalamin (at first this still gave me symptoms, but as I improved those symptoms disappeared)

    Hydroxycobalamin (4000 Mcg) - Perque - as with Rich Vank's comments, I have noticed better results with this than the Yasko B12 hydroxy drops.

    Adenosylcobalamin (1000 - 2000 mcg) - Dibencozide.

    I sometimes take additional Calcium Folinate - e.g. 500 - 1000 mcg.

    I am taking NADH to help with my high oxidized glutathione to reduced ratio based on some of Yasko's comments.

    I wasn't aware of the other effects of Niacinamide, although I've been reading a lot about it in connection with detox protocols recently. Not sure what to make of it yet. Any links to the "it also inhibits NF-kB and TNF-alpha" material?
  10. Skyline

    Skyline Senior Member

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    Another update, things have been getting much much better on the whole.

    1. Dr. Scott McMahon and biotoxins: Had my skype call with Dr. McMahon which was long (90 minutes or more) and thorough and the outcome was that he believed I was a very very likely case to fit the CIRS (Chronic Inflammatory Response Syndrome) case. He wagered a 98% confidence level on this - to be confirmed with the Shoemaker labs (I have a list of around 15 essentials to get done).

    He has put me on treatment as follows:
    A. Avoid further exposures - basically this comes down to becoming aware of symptoms and any time you feel some kind of flare to try and tie it down to a possible source of exposure e.g. building, etc. and avoid it going forward. I'm moving to a small coastal town with onshore winds in the Yucatan of Mexico on Monday - which he felt would deal with the issue pretty well. So looking forward to that.
    B. Cholestyramine (CSM): 4g X 4 times per day. I started yesterday and if today is anything to go by (it's end of day now), it may already be starting to do its job. CSM binds up the biotoxins and takes them out of your body stopping them from recirculating. Dr. Mcmahon felt that in my case 3 months of CSM would probably get me to feeling great again.

    The call with Dr. McMahon was extremely positive. As many others have observed, it's a relief when you get a firmer diagnosis - and even more so when there is a very specific treatment plan. I'll keep updating the results on this.

    2. Mitochondria: I received my Mitochondrial Functional tests back which reveal a variety of issues, some worse than others. Overall it looks like I have already recovered somewhat, and indeed most of what Myhill advises I have been already taking as support for most of my journey. My overall mitochondrial health is on the edge of low end of normal reference range. Other areas like my SODase status (the area I most have to work on, and in which my 23andme shows mutations - I need to study this more), general damage (Cell free DNA) and my ATP status were not so good. My CoQ10 levels are at the bottom of the normal reference range. If anyone would like to see the report data let me know.

    Myhill commented that my leg twitches (which are a little better) are probably due to the low magnesium status that these test results point towards. So I have stepped up use of Transdermal Magnesium Chloride.

    3. Yasko: More results back (UTM, UTE, UAA) show some progress on the areas I've been working on (for instance Lithium status). My ammonia was much higher however, despite taking the CBS ammonia RNA she recommends. As a result I've looked into other ways of controlling ammonia including Butyrate, Creatine and L-Carnitine. My B12 does not seem to have kicked in yet based on these results (no cobalt showing up yet).

    On this front, one of my symptoms is probably very valid. For the last 6 months I've had extremely dark pungent urine literally all the time. It had become normal for me. A few days ago I was shocked to see transparent clear urine - and this has continued since. I would say it is probably back to looking normal over the day now, and this seems to have been accompanied with relief of other symptoms (headaches etc.).

    4. General Detox: I've been working my way through Cutler's books, and other sources.

    For the last few weeks I've used a combined detox protocol with bentonite clay, Beta Glucan, Grapefruit seed extract, activated charcoal and daily infrared sauna. The detox agents were taken before bed each night, with some exceptional nights where I took a break based on feeling (typically digestion breaks). I had bought a portable infrared sauna and been using it most mornings (unless i felt rough and didn't want to load my body with more stress).

    I believe the detox, in particular the Bentonite Clay, was already binding some of the biotoxins (as with Shoemaker/ McMahon's CSM), and was supporting improvement of a lot of the symptoms.

    Infrared saunas are very 'conflictual'. Yasko advises not to, but her reasoning isn't clear (no real explanation is given). Cutler believes that the data on infrared saunas is skewed saying a lot of it comes from manufacturers and he is worried about heat transfer (that is underreported). Meaning more heat gets into body (rather than just surface fat) and could stir up more detox and load the body more than you are aiming for.

    Others, like Myhill, Roy Mankowitz, Ron Hubbard (interesting, I didn't know the history behind his successful use of it in programs) and various drug clinics - write about its high effectiveness. Myhill reports a little bit of data on it, decline of toxins in fat biopsy.

    I've continued with it despite the conflicting reports because I feel better on it and I'm using it in a way that is likely to cause the least issues. I hydrate up to promote sweating beforehand and stay in the sauna the minimum of time to get a first layer of sweat - then I shower it off. Typically I'm in the sauna for 15 minutes, it varies based on how hydrated I am amongst other things (probably mostly hydration as far as I've seen).

    I will start Cutler's protocol with ALA on very low dose when I get settled in Mexico - I believe that I will have to take it very easy with that and I'll be aiming to 'avoid symptoms' and play it safe.

    On an ongoing basis I continue to take other detox supports as have been discussed before in this thread such as the Broccoli extract adreno referred to and calcium D glucarate, molybdenum and manganese, and antioxidants to help my body get over the oxidative stress.

    Summary: I'm in a much better place now, this is the best I've been since this whole journey started a little over a year ago. Through till just a month ago it was a constant steady decline with a growing number of symptoms. I turned the corner then, and since have seen that many of the symptoms have virtually gone (neuropathy, headaches), and many others are better (PEM, sleep). The turning point seems to correspond with the point at which I really snapped and made recovery my full time job - taking nothing off the table as too extreme to be considered. Fingers crossed this progression continues...
    helen1 and Crux like this.
  11. Lotus97

    Lotus97 Senior Member

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    Skyline
    I really appreciate you making this blog journal. I wish everyone had a detailed account of their methylation experience in regards to dosage and symptoms (good or bad). We could learn so much from everyone's experience.
    That's interesting what Dr. Ben said. I found this chart that shows the potency of different types of methylfolate.
    http://www.methyl-life.com/methylfolate-types.html
    [​IMG]
    I assumed Thorne's was the generic, but it looks like the methylfolate in their B complexes, multis, and methyl guard is the same as Quatrefolic's. And Thorne's standalone L-MTHF supplement is actually Gnosis' Extrafolate which is equivalent to Metafolin in potency. Their 1 mg seems to be about the same price as Folapro. Solgar's Metafolin is a better value it seems for those wanting extra methylfolate, but it does have the sugar alcohols.
    If you don't mind the extra calcium folinate/folinic acid (ie it doesn't inhibit SHMT for you), you might want to check out this B complex:
    http://www.myvillagegreen.com/pathway-b-complex-50.html
    It seems more reasonably priced than Thorne's (although you do need to take methylfolate separately). If Thorne is working for you though, I can understand why you wouldn't want to "rock the boat". I haven't started methylfolate yet, but I'm taking that b complex with 500 mcg of folinic acid so hopefully I'm converting it. I plan on starting methylfolate within the next month. I'm also taking 1000 mcg hydroxocobalamin, 2000 mcg adenosylcobalamin, and 166 mcg methylcobalamin. I don't really have a choice in regards to dosages. If I increase it too high I feel terrible. I might even back down a little bit. Methylation can exacerbate inflammation which might be counterproductive. At least for myself I think that could be the case. One thing I wonder is about the people who don't feel bad at the higher doses. It seems to be conventional wisdom that whatever dose you're able to tolerate is the dose you need. That could very well be true, but has anyone actually proved this?
    Have you checked out this thread?http://forums.phoenixrising.me/index.php?threads/post-your-nutreval-krebs-cycle-results.23166/
    There's an interesting discussion not just about Krebs, but also oxidative stress and peroxynitrite. These are subjects I've been putting more attention on recently.
    I've been considering starting ALA again (stopped due to possible mercury issues). What do you consider a low dose? I've seen it being sold as low as 1 mg. BTW, dbkita said he felt better with R-lipoic acid (compared to ALA) and seemed to think it was due to his CBS issues (if I remember correctly).
    I assume you knew about B3 and using up SAMe/methyl groups (although dbkita commented that he thought niacin was more effective than niacinamide in this function). I seem to remember someone else saying that niacinamide worked just as good as niacin for them so I don't really know who's right. As far as anti-inflammatory I'm bad at interpreting these studies so I'll just give you dbkita's response (which was lukewarm to it's effectiveness).
    Somehow I thought it was niacin specifically that caused the liver issues, but I'll look into it. dbkita takes 750 mg of niacinamide himself (although I'm sure he wouldn't recommend that dose to anyone else as he doesn't like giving recommendations in general). Adreno was also skeptical of niacinamide (at least compared to other supplements)
    Skyline likes this.
  12. Skyline

    Skyline Senior Member

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    Thanks for all your comments and references, as usual some stuff I wasn't aware of so I'll jump on and look into them :)

    That's not my opinion, I think you have to be careful with "the more is better" perspective and if you are going that way you definitely have to follow your progress with some testing of relevant biomarkers to make sure you're not causing more problems. While symptoms are certainly useful we can't fully trust them since a symptom can be a positive response (detox, immunological) and lack of symptoms may be short term, with a new or different symptom arriving in a month that you have caused.
    The way I look at it is that my body has taken a lot over the last 20 years given my lifestyle (stress, environments lived in) and I felt okay through that time but I was setting myself up for this disaster. So no symptoms, doesn't mean no damage.
    I think back to a quote from Steve Jobs which I'm paraphrasing because I don't have the exact one "The turnaround of Apple took a lot out of me, I was working round the clock. It was then that I unknowingly let the the cancer took hold."

    I had been using the R-ALA and it seemed to pretty quickly give me headaches so I dropped it. Afterwards reading Cutler's work I found that he only recommends using ALA, and is against using R-ALA in part because of the lack of research, especially with a view to chelating. He feels that you don't want to run an experiment with R-ALA because that's what you're doing with the lack of research. So based on those two facts I've switched to ALA.

    I have ALA in 100mg doses, and I plan to split the capsule to take 50mg via Cutler's protocol. A dose every 3-4 hours for 3 days. So over the day, that adds up to 300mg - 400mg.


    There was a misspelling in my above post, I meant to say "I'm not sure what to think of it." - I have to read a lot more on Niacinamide before I have a clear idea of what it's impacts can be. For now I'm taking one NADH tab in the morning.
  13. taniaaust1

    taniaaust1 Senior Member

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    I personally think antioxidants can be worth playing around with. Ive found seleium and good quality Vitamin C supplement to be helpful.
  14. Lotus97

    Lotus97 Senior Member

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    That's interesting. I'm looking into the electron transport chain (Alex said that was important factor when supporting Krebs), and NADH was listed in the wikipedia entry. Swanson is having a sale on NADH so I might buy some.
  15. Lotus97

    Lotus97 Senior Member

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    dbkita said vitamin C is the main way to break the GSSG complex and recycle glutathione. I had to Google GSSG. It seems that it's an abbreviation for oxidized glutathione.
  16. Skyline

    Skyline Senior Member

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    a few things worth commenting on for last days.
    1. Long haul flight to Mexico: gave me a terrible 60 hour headache that took alot of work got me to beat down. Over the last year I have increasingly got these headaches although much less significant b4 cfs. What is it about airplanes that does this? hydrating does not seem to help. Is it the oxygen levels? contaminated air? or something else... Will be an ongoing investigation for md till its eliminated.
    2. Maya riviera environment: once the headache was beaten I have been doing really well - able to be more active without any issues . Pem or those I'd suffered even the last month in uk. The air is completely clean here, I spend nearly all the time outdoors in open air (even at night window wide open). I feel like I'm getting stronger everyday which is also shown by my personality returning to its more energetic levels. I lacked the energy for charisma before but it's now returning naturally.
    3. Water damaged building: yesterday visited an appartment that was nice bit had a musty smell and the air on looked old/ unkept. Upon entering the room I pretty much immediately had some head symptoms that I get with cfs: dizziness, headache pangs , brain fog. once I left it took me half hour to start feeling better again.

    The 2 and 3 points above fit with the bio toxin hypothesis and my treatment with dr Mcmahon.
  17. Lotus97

    Lotus97 Senior Member

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    Do you have MCS? I know the smells from everyone's laundry/cologne/perfume/shampoo/conditioner would cause me a lot of problems if I was to sit on an airplane for even a short period of time. I've read that they do circulate outside air on airplanes, but I don't think that would be enough for me.
  18. Lotus97

    Lotus97 Senior Member

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    Since I posted earlier in this thread about different types of methylfolate I wanted to follow up on that. There's a thread discussing it here:
    http://forums.phoenixrising.me/inde...-thorne-misinformation-and-mislabeling.22529/
    The methylfolate in Thorne's standalone methylfolate products are Extrafolate-S so they should be ok although Solgar's Metafolin is still cheaper. I am wondering about the methylfolate in Thorne's B complexes, multis, and Methyl Guard which is listed as L-MTHF. Dr. Ben says L-MTHF is ok, but that link I provided as the source to that chart says that L-MTHF could be generic or racemic. I don't know who's right. I don't have the brainpower to figure it out.
  19. Skyline

    Skyline Senior Member

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    Thanks for highlighting that Lotus97. Something else for me to keep an eye on.

    I don't have MCS in anyway as far as I know but I have cornered down some things that I react badly to:
    1. Chocolate
    2. Low quality coffee (or ground coffee left out for a while)
    3. non-organic foods (i.e. pesticides etc).
    4. Dairy
    5. Gluten

    My current assumptions are:
    A) for coffee and chocolate it is a mycotoxin issue - most chocolates, even high quality have it, and sometimes I can eat a bit of chocolate and be okay. But i have a whole bar boom.. hits me. So I believe it is a quantity of mycotoxin issue. Ground coffee left out is easily contaminated with higher mycotoxin content.
    B) Methylation having interrupted proper detox giving me the issues with pesticides etc.
    C) Dairy and gluten has more to do with stimulating immune activity
  20. Skyline

    Skyline Senior Member

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    Update

    1. Lab Test Results: Had some standard liver function test, CBC and other basics done. For the most part these were all a lot more normal - just two minor glitches that could have been due to other factors. Will recheck in a month to confirm.
    2. General status: Overall doing much better and feeling stronger. Have run out of quite a few supplements for methylation and Yasko's protocol because of issues with Mexican postal service. Am weathering it better than I would have previously, but having a bit more difficulty with sleep and a bit more PEM. Cholestyramine ongoing - 6 weeks into it of total 12 weeks or so.

    Next Steps:
    1. Getting a trip to U.S. organized to get all the Shoemaker / Mcmahon labs done - likely be mid-July.
    2. Figuring out postal service to get supplements back inline.

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