Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, January 2, 2014

My Health - 2013 In Review

I keep a daily health chart where I give my health an overall daily rating on scale from 0 to 100%, where 0 is dead and 100% is how I felt on my absolute worst day before getting ME/CFS.  (So far I haven't cracked 100 since getting ME/CFS).  At the end of each month I average my scores to track my progress from month to month, and I do the same from year to year.  I have a pretty good system of benchmarks to ensure that my rating system stays objective and doesn't skew over time.

The year 2013 was about five percentage points higher than 2012.  This is an enormous improvement for me.  

Of course the trick is to determine what caused this improvement.  That is a very difficult and complex question.  In many ways, the answer is unknowable given all of the treatments I've tried.  I can only offer my best guesses based on intuition and daily charting. But there's always the possibility (although I believe, slight) that I would have improved the same amount had I simply sat back and waited. 

I started Equilibrant in mid-2012 and have continued at a dosage of 6 tablets per day throughout 2013. I believe that it has continued to help me improve.  I have not yet experimented with backing off the dosage, but there have been days where I have forgotten to take Equilibrant and felt (I believe) worse because of it.

Second, starting in about March or April I charged aggressively into Amy Yasko's full methylation protocol.  I submitted urine testing, I analyzed my genetic results, and I was determined to give the protocol every possible chance to reveal if there was anything to the hype.  At the same time I tried to listen to and consider the critics.  

For those who are familiar with Yasko's protocol, she recommends a seemingly ridiculous number of supplements and they can be quite expensive, so I didn't take this decision lightly.  After starting the program, I quickly came to believe that the RNA supplements were ineffective for me so I stopped using them.  Although I started the program in March, it wasn't until October that I had all of Yasko's recommended supplements fully implementeda seven month process.

I took a significant step up in baseline between July and August (about 3 percentage points) and I have more-or-less sustained that improvement since.  This improvement coincided roughly with adding Yasko's "short cut" supplementsbefore I even got to the methylfolate and vitamin B12 supplementsthe cornerstones of methylation treatment.  So I believe there may have been a connection between Yasko's protocol and my mid-year improvement.  (For more on "short cut" supplements, see mid-way down this post. In summary, I believe it was the PS/pc/pe Complex that may have been responsible for the improvement.) 

More significantly, my brain fog went away almost completely at around that time and has stayed away since.  The improvement has been remarkable. After spending 2011 and 2012 mostly brain fog-free, I started to get brain fog on a daily basis in roughly the first half of 2013.  Although my energy levels and flu-like symptoms had improved, I was concerned that I had simply traded them for brain fog, which is maybe worse. 

Well, for whatever reason, and maybe it was the Yasko program, the brain fog is almost completely eradicated.  I still get it very mildly on occasion and for no apparent reason, but it is basically a non-factor since about August of this year.  In 2014 I plan to cut back further on some of the Yasko supplements and see if the brain fog stays away.

The other major change I made in 2013 was that I switched from testosterone cream to testosterone injections (self-administered) in early April.  While this may have contributed to the improvement, there was a 4 month gap between the start of the injections and the improvement, which makes is a little less clear.

I also moved residences in November and noticed that I have slept better over the past month and seem to have a little more energy in the mornings.  I'm wondering now if my old house may have had environmental "issues" that were bringing me down.  I'll report back if this improvement continues.  

I don't mean to give the impression that 2013 was all roses.  My weak immune system continues to ensure that I contract raging sore throats and a swollen tongue at least 4 times a year.  Despite my best efforts, I couldn't avoid having to take antibiotics twice this year.  I'm working now on restoring my gut flora yet again with a probiotics regimen.  

Additionally, I welcomed a new symptom in the Fall of this yearcrippling groin pain and prostatitisbacterial infection of the prostate. It's unclear if this is related to ME/CFS, but I suspect my weak immune system played a role.  I am feeling better "there" now but my urologist says that once infected, I will always be more susceptible to repeat infections.   

Looking forward to 2014, this may be the year that I begin to actually reduce the number of supplements I take in order to determine which ones have actually contributed to my improvement and which ones may be less effective. 

Thanks as always for reading, and I wish you all improved health in 2014. 

17 comments:

  1. Hi Calvin. I'd love to be in touch. jen@canaryinacoalminefilm.com

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    1. Hi Jen. Yes, let's chat. I will send you and email shortly.

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    2. Actually Jen, my email got bounced several times. Are you sure the email address here is typed correctly? Meantime I'll try to verify it through someone who I think is a mutual contact....

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  2. Hi Patrick! Great post. Can you help me with a few questions? I am totally overwhelmed researching methylation. I am sicker than ever and my brain is badly affected. I'm waiting on my 23andMe results and then it'll probably take me another hundred years to read it and figure out what to do with it. From your knowledge, are there supplements I should NOT start before knowing my results? (I'm a clean slate right now, med/supp wise) And are there supplements/vitamins you don't think would negatively impact the sequence for methylation? For example, I would like to try D-ribose and neuroprotek now and maybe Equilibrant down the road. I'd also like to start a few things again this week: vitamin C, D, B6, B2, fish oil, Probiotics, maybe CoQ10.
    I know you can't give me medica advice! So, disclaimer noted, just wondering if you can tell me if there's something I shouldn't taste until I embark on Yasko's stuff (genetic results any day now).
    Lastly, so you think it is necessary to do the Yasko urine sample?

    Thank you! Happy New Year! Hope the new house and your family are doing well!

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    1. Hi Elizabeth! Great to hear from you, but so bummed to hear that you are sicker than ever. Ugh!

      Um.... let's see. Well I know that Yasko is pretty adamant about taking her supplements in the right order and only starting on each new phase after you've passed the previous phase. I don't really think there's any way around reading her book (which is available for free online) if you're going to do her regimen. Can you handle reading a book right now? She also has a simplified protocol which you might want to do instead. Google that.

      Since D-Ribose and Equilibrant are not part of her protocol, I went right on taking those while I implemented the others. It didn't seem to affect anything. Actually, when she saw how much calcium is in Equilibrant (I emailed her everything I was taking) she told me to stop taking it but I ignored that advice. (She is certain that calcium leads to brain inflammation.) Instead I cut calcium out of my diet in other ways. I believe all the other supplements you mentioned are part of her routine or contraindicated by her routine, so you would probably want to wait on those if you do the Yasko thing.

      I am not sure how critical it is to do the Yasko urine samples to be honest. All i know is that when I have submitted them, she tells me how to tweak my supplements. Without that, you're going a little more blindly. But they are really expensive so there's that. Tough decision...

      Happy new year to you too!

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    2. You still on any antivirals m8?

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    3. Hi Chris. Yes, I'm on Valacyclovir, 1Gram 2x/day

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    4. Pat, that is generic valtrex right? How are you getting on with that? Any improvements?

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    5. His Chris. Yes that is the generic version. I have improved but it's impossible to tell what's from what. I continue to take it nonetheless based on my doctor's recommendation and research. After I've stopped improving and plateaued, then I plan to start cutting out different treatments to try to determine what I really need to keep taking.

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  3. Thank you so much! just what I needed to know, I appreciate your help. I'm going to get my husband to help me read the book.

    I'm excited to see you are in contact with Jen Brea! I don't know if you saw my blog, but I was trying to promote her Kickstarter as much as possible- I got my entire extended family to donate to the film. I have laid in bed dreaming about the film I would make about this illness and hers looks like something I would love to participate in. Agh! I want so badly to get up and create, teach, help, execute! I am so detail-oriented and fastidious (don't think the typos on my blog posts are indicative of me, please!), there must be a project out there for me to contribute to... :) Fingers crossed methylation helps. X

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    1. I wish you the absolute best in your experiment with methylation and with everything else, Elizabeth. You deserve it.

      I did see your bog about Canary - that might have been the first place i heard about it. I agree it is very exciting. I can't wait until it comes out.

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  4. As long as we're having this lovely long chat, I may as well tell you I'm considering somehow getting myself to Cali to see Dr. C. Other options are Kogelnik, Bateman or Peterson. I doubt I'd actually be able to get in to see the latter two and I think I'd prefer Chia over Kogelnik, but would love to know if there's any reason why you think I shouldn't spend a million dollars renting an RV and taking a two-week trip with the husband and dogs. :) akaemilo at gmail dot com. Thanks for the nice comment, P!

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    1. Hi Elizabeth. Sorry it's taken me so long to get back to you. It's really hard to say which of those doctors would be best, isn't it. They're all superstars. All I know is I have personally talked to 4 or 5 of Chia's patients who all say he has helped them. Then again, I've heard about some others who went to him for a while then stopped because they felt like they got to the end of the road with him quickly and he was only able to help a little. It's hard to say if that's worth all the money and effort it would take to get here. I think, however, he will do Sykpe appointments after an initial in-person (but I'm not 100% sure about that.)

      Let me know what you decide...I'm following your progress and always rooting for you.

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  5. Patrick- great blog on living with CFS! Please email me when you see this at mtrucillo(at)recallcenter(dot)com when you see this. Thanks!

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    1. Hi Mario. Thanks for reading.. Look for my email...

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  6. Hi Patrick. I just heard about your blog on HealClick (my new favorite site) and came to visit.

    I have ME/CFS, although I'm not sure for how long I've been ill (but I think for awhile!). Anyway, when I found out I was ill, I knew that I had to keep track of my 'progress' (whether good or bad). I keep a paper log with a list of various 'symptoms' I suffer from. My rating system is simply 0 - 10. (I haven't even had a 7 day since I started.) The plan was to then enter all data into an Excel sheet, then graph it. I haven't gotten around to that yet. Does this seem like a viable way to track my progress?

    Thanks for your input.

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    1. Hi RD, sounds like you and I have had the same ideas. I basically do the same type of tracking as you. (I don't use Excel, I use Google's version available on Google Drive because I want to be able to access it from anywhere.) I even graphed my results too. Anyway, I have been doing this for two + years and while I have made some useful connections -- usually involving medication side effects -- I haven't been able to gain any kind of understanding or control over crashes, which was the main idea. That is still frustratingly elusive.

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