Discussion in 'General Treatment' started by Skyline, Dec 13, 2012.
Good to hear you're continually getting better!
Thanks @adreno. How are you doing? Any improvement your side?
A few more upgrades added in the last weeks have me really feeling like I'm set for the home run now.
1. Dr. Klinghardt's work on electromagnetic waves: For the last month I've cut the electricity in the apartment at night to protect sleep. Sounds crazy, but once you get into his work you can see how it could have an impact. And my symptoms and general feeling seem to reflect a step change in 'repair' since I started it.
2. Grounding: Started tracking the charge on my body around the apartment and investigating this area for improving body repair. The last apartment had some particularly bad dirty electricity and in particular in the bedroom. I began grounding at night semi-successfully, still working through the implementation details. The lead I bought stopped grounding me after a couple of nights so I'm going to purchase something better - more robust. The new apartment I'm in measurements are down, with a lot less grounding necessary. AKA less electromagnetic waves. I meditate / walk barefoot to get extra grounding time in also.
3. Moved to a cleaner / lower humidity environment: I moved across Mexico to the other side which is in the 60 to 70% humidity range, less susceptible to mold. I now live facing the beach, in the most pristine clean apartment I've ever seen - the air inside has no scent of anything when you enter. And that has had an immediate impact the last week.
If you havent already, get yourself checked for the inherited condition in which makes one easily end up with too much iron (it can end up damaging organs). I dont know if you went throu 23andME which tested for the common inherited iron defects, my test came back saying I had it.
Yeah, my iron levels were up due to 'inflammation' - that was the end discovery of that process. So they aren't a bad thing to watch from that point of view.
I don't have those iron defects.
I increased my intake in my diet of Butyrate via making grass fed ghee an important part since over a year ago. This was due to research suggesting butyrate helps heal the gut lining.
A new study just came out illustrating how it maybe (also) helping to regulate the immune system:
Quick update: Last few days functioning near normal - best I've felt since the whole CFS things started.
A few more additions I've made to what I'm doing which I think have contributed (no data, yet):
1. Moved to new even cleaner apartment (on beach, facing ocean 20+ floors up with a balcony) - absolute cleanest I could find - it costs more, but the investment in $$ is nothing compared to the current and future medical costs of not doing it, lost time, and lost productivity!
2. Thanks to balcony I now spend around 90% of waking day on the terrace working or outside walking/ relaxing. Aka in fresh air, not 'building air'.
3. Purchased and used a HEPA P100 mask for when I have to go into commercial buildings, airports etc (I look like Bane from the Dark Knight Rises, but it has enabled me to go to cinema and shopping in walmart Symptom Free). Which was impossible before - awesome).
I've also committed to getting ERMI/ mold testing to any building I live. First sample results for where I currently am come in about 5 days. This will give me a much clearer picture on my mold/ mycotoxin exposure levels - and relationships with other biomarkers I'm tracking.
Note: Ben Greenfield also interviewed me for his podcast where I talk mostly about managing health while traveling, but there are some CFS/ CIRS tidbits in there you may find useful. You can find it/ listen here: http://www.bengreenfieldfitness.com/2013/11/how-to-stay-healthy-while-traveling/
More test results in:
1. MARCONS - I have to antibiotic resistant strains, so getting that treated with the BEG spray. This would've been holding me back from recovery - using up MSH.
2. ERMI - Index 0.72 for the 'clean apartment' I was in with a lot of aspergillus found, revealing that there was some unseen water damage. So I've moved again, to an 'even cleaner' apartment. To early to know if that has further positively impacted recovery.
Some more things that are working:
1. Added midday nap - has enabled me to get between 7 and 8 hours sleep / day. For me it's all about the process and timing. As soon as I feel a little tired I go to bed, put blackout blindfold on and listen to a podcast. I'm out within 5 minutes nearly every time.
2. Spending more time in fresh air: Now have a balcony on both sides of building, so when it's too hot at front I go outside on balcony round back. Basically spending virtually the whole day in fresh air now.
1. Moved apartments so sent off another sample to Mycometrics for the ERMI. Fingers crossed it comes back < 2.
2. Have the Ubiome kit arriving in a couple of weeks - that will get me a look at my microbiome and see how it compares to controls, should be interesting.
Treatments - just one new:
1. Beg spray + Rifampin arriving in couple of weeks (30 day course to kill off the MARCONS). I'll get a new batch of shoemaker blood labs afterwards to assess progress. It's very possible that the Marcons is what has been holding me back from getting on the road to complete recovery (fingers crossed) - I've suspected it for a while.
Have a bunch of new medical/ tracking devices arriving early January - looking forward to see what I discover with them.
Merry Xmas everyone!
I was hoping to be 100% clear within 3 months, but I think that's optimistic. Yes, I'm doing much better, perhaps 80% recovered.
- I've been surfing a number of times in very rough waves which required hard swimming for 2-3 hours - No PEM afterwards
- My capillary hypo-perfusion in the legs (numb legs) has mostly gone - appears slight some days, but most of the time isn't there.
- Energy is much better, and am able to go into more commercial buildings without repercussions it seems (moved to San Diego for a bit, so probably better building conditions)
- Completed treatment of MARCONs yesterday, time to retest and see where that is at (fingers crossed eliminated)
- Still getting headaches from time to time. Say once per week.
- Still an ongoing battle to get 7 hours of sleep in per day.
- Still shaking/ lack of neuromuscular control under high exertion (heavy things)
- VCS test still isn't clear.
Tests/ Tracking Coming Up
1. Ubiome microbiome test - waiting for results to come in.
2. Methylation Status
- Getting retested with Methylation Pathways panel, and some of Yasko tests to see where I am at/ progress made
3. Mold/ biotoxin:
- HERTSMI / ERMI: getting done for current apartment, feels super clean - we'll see if my intuition is now correct.
- Looking into blood and urine panels to see which is best to assess levels of mycotoxins in body.
4. Sleep tracking for REM, deep and light sleep now much better - my watch tracks all of these so I can see progress pretty clearly.
5. Hepatic profile: Considering a liver phase 1 and 2 profile to see how well it's coping (i've had slightly raised liver enzymes for a long time, although last tests showed them finally normalized)
6. MARCONS status via Staph test
7. Genova Diagnostics NutrEval test: Mitochondria status monitoring?
1. Detox: Infrared sauna daily for 30 minutes, various supplements to aid/ provoke detox, CSM 4X daily, using rebounder daily.
2. Rectal Ozone Insufflation: Am looking into this treatment and how 'logistically' to get it - top priority.
3. Mitochondria: Have a stack of mitochondria supports am taking now - looking into ways to 'assess' mitochondrial status and improvement - correctly, Dr. Terry Wahl's uses the Genova Diagnostics NutrEval test - so will probably start there.
4. Mold Avoidance: I'm limiting commercial buildings I enter as much as possible for next 2 months, trying to keep to safe ones. Am using TaskRabbit and other services to get what I need done.
- Headaches have been eliminated unless I get a mold exposure (then there is around a 2 day delay before I get hit by a headache - however they are much shorter now - 1 day, instead of 3 or more).
- VCS is now clear
- MARCONs was cleared (test now negative)
- C4a has dropped to normal levels (main inflammatory immediate marker for mold exposure)
- Resilience to exercise has increased (walking all day is no longer an issue, have started some body weight training)
- Resilience to mold exposure seems to be better (doesn't affect me as much)
- Still an ongoing battle to get 7 hours of quality sleep in per day.
- Still shaking/ lack of neuromuscular control under high exertion (heavy things)
- Some twitching of muscles in legs
- TGF Beta 1, MMP9 and MSH / VIP biomarkers still out of range
1. On high dose fish oil protocol to lower MMP9 - I've combined this with a stack of supplements targeting decreasing lipid peroxidation (I didn't like the idea of throwing a lot of polyunsaturated fatty acids into a still high oxidative stress environment)
2. Mold avoidance - big focus, especially where I live. Moved to driest climate in Europe which is working well.
3. Detox/ sauna: Infra red sauna got broken in transit - but will get new one as effects seemed very positive. Have pushed to a 20 mins X 2 daily for benefits.
4. Experimenting with mindfulness meditation to improve sleep - preliminary results seem very positive - need to collect more data on it - but it's highly motivated me to keep up a 1 or 2 X meditation of 15 minutes or more daily.
I forget how far I've come until I come back here and look at old posts. I guess also the time that passes before I remember to come back is a good indicator also.
- Virtually zero headaches last month (couple of slight, hardly noticeable ones that went after couple of hours)
- VCS clear (I track it every morning with this site vcstest.com and take CSM with any dips)
- Resilience to exercise has increased (Haven't tested with high intensity, gradually increasing)
- Resilience to mold exposure seems to be better (possible increase of MSH or VIP - need to get tested)
- Cognitive repair - I'm at the 89th percentile across the Lumosity user base - i'm definitely much clearer headed and some of my cognitive issues that had appeared seem to have disappeared (dyslexia, memory recall, fog, anxiety, depression).
- Still an ongoing battle to get 7 hours of quality sleep in per day. Sometimes I get it, sometimes I don't.
- Some twitching of muscles in legs.
- Intense exercise intolerance (assumed, not yet tested - within a month i'll have built up to reasonable intensity to test)
1. Daily hike up nearby hill - 35 mins up/ 35 mins down. Tracking HRV for recovery to make sure I don't push too far - so far no problem. Will add infrared sauna + bodyweight exercises provided my HRV increases or is stable.
2. Mold avoidance - have made this 100% for time being.
4. Mindfulness meditation and HeartMath meditation - 2 X 20 minutes daily, sometimes another session inserted. Tracking HRV for effectiveness.
5. Cognitive tracking: Luminosity every morning to track any 'blips' plus to provide cognitive stimulus for brain repair.
Interview I did this morning with Dr. Courtney Craig talking about some of the things that have helped me on this journey.
On iTunes: https://itunes.apple.com/us/podcast/spoonieradio/id889652902
Grateful for my progress so far and how 'normal' I feel today.
- I bounced back from an exposure to stachybotrys which took me out around 10 days ago - it had got cross-contaminated in my apartment and could have well been from one of the original houses where I originally got early symptoms of CFS (visitors from that house coincided with symptoms and discovery of mold growth). An important aspect of this is that I was able to clean/ remediate the apartment and it is now good as new. The experience has thus taught me how to deal with this event with confidence the next time round. I had previously thought remediation of this was particularly complex - but it turned out not so hard.
- VCS virtually 100% clear the last few days
- Have got off the Cholestyramine drug used for mycotoxin binding - now only take it with exposures and seem to be able to resolve the exposure with 1 full day of treatment (4g X 4) - that's the experience so far.
- Ongoing battle to get 7 hours of quality sleep in per day. Sometimes I get it, sometimes I don't.
- Some twitching of muscles in legs.
- Exercise intolerance - a confirmed issue for me too - but graduated exercise is also helping to build tolerance
- Methylation supports - confirmed i still need these - need to get retested to see where i'm at with them
Carrying on with existing and focusing on getting these activities added in:
1. Hiking to increase exercise tolerance
2. High nutrition diet + increased calories: It have a feeling it is too early yet to put on muscle weight, but attempting by eating 3 X liver/ heart per week in addition to a Wahl's like high nutrient / low toxin diet.
2. Infra-red sauna (heat based hormesis + general detoxification via sweat)
3. Working a full lab test workup to check my status for biotoxin illness, methylation and other indicators of progress
An excellent interview -- thank you so much for sharing this info!
You mentioned an inexpensive HRV (heart rate variability) monitor -- which make do you use? And do you use it with the Ithlete ECG receiver and the Ithlete app? Thanks.
Hi @waiting, I use the sweetwater HRV app with a Polar H7 chest monitor. I believe ithlete has a similarly priced system - if it's around $50 or less, it's the same price.
I have an expert on HRV coming on my new podcast (http://thequantifiedbody.net) in the first week - he'll be covering all the details on how to use, which device and benefits etc.
The sweetwater app looks really good. I have a Polar FT7, so I *think* it's compatible, and I have an iPhone 5.
It looks like I'd have to also get the 60beat receiver. I can't see where to purchase it right now, but I already entered my email on your website, so I look forward to hearing your podcast!
Released the first interview on using Heart Rate Variability:
I use HRV to pace myself, with a combination of supine and standing readings taken every morning. Whenever the HRV score starts declining I take a rest/ recovery day - that seems to have helped me to keep momentum going forward lately. I'm still collecting data - it's been a couple of months, so I'll write up something when I've been doing it longer.
The interview above is about using HRV for workouts and training specifically, that's the expert/ researcher's specialty, but you'll learn a lot about HRV and how it works and what influences it - was a great interview going into more depth than I've seen elsewhere.
Enjoy! And if you have feedback or ideas on topics for me to look for experts to talk about, please let me know here:
You can also try a Google Site Search
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