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

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

Sunday, November 25, 2012

Three Keys to My Recent Improvement

First, I want to clarify that I am not "all better."  I realized, reading my recent posts, that it wasn't entirely clear whether I was saying I'm "better" as in "all better" or better as in "improved."   It's definitely the latter. (The word "better" can cause all sorts of confusion, as I've learned from communications with my friends and family).   I have jumped up to a new plateau that is perhaps 5 or 10% better on average than I was before.  But I'm still quite limited in what I can do.  I fact, I realized after trying to work yoga back into my weekly routine that I'm not yet ready for serious exercise.  Even relatively light yoga set me back temporarily.

The good news is that, even if I regressed to my previous level of illness tomorrow, I'd still feel encouraged just knowing that this type of improvement is possible.  I'm aware that the CFS message boards are full of long-time CSFers who experienced extended periods of improvement, followed by remissions.  So I don't think I'm out of the woods by any means.  I'm just trying to enjoy my improvement for as long as it lasts and, with any luck, build on it.

Key 1 - Equilibrant

First, how do I know what caused my improvement?  The short answer is, I don't know for certain.  Nothing is 100%.  Maybe I would have improved had I done nothing.  But I think I can be fairly confident in my assessment based on the timing of various improvements compared to the initiation of treatments.  And when I skip a dose of these treatments and experience a setback, it confirms my initial suspicions.  There's also a small amount of intuition involved.

By taking Equilibrant, which I've discussed at length in past posts, I believe I laid the groundwork for further improvement later.  By itself, Equilibrant didn't lead to any tremendous improvement, but it stabilized the situation.  Prior to Equilibrant, my crashes were more severe and lasted longer.  But as I reported to Dr. C, I didn't feel that it was necessarily making the highs any higher.  Rather, it muted the lows and made them less frequent.

Key 2 - Infrared Sauna

Later, when I added the far infrared sauna to my routine, I took a significant step forward.  Building on the groundwork that the Equilibrant laid by modulating my immune system and stabilizing the situation, the infrared sauna actually raised my daily health average, so that my highs were higher (on top of the lows still being less severe).

Key 3 - Thymic Protein

The third factor is that I increase my dosage of thymic protein whenever I start to feel rundown or that a crash might be imminent.  I had been taking thymic protein occasionally for almost a year, but usually only one packet per day when I was feeling most ill.  More recently, I increased the dosage to the maximum of 3 per day (but again, only when I start to feel crash-y).  This seems to further shorten and blunt any crashes that might have designs on ruining my day/week.  The increased dosage was suggested by Dr. C (but only after inosine and several other Equilibrant co-factors failed).  

If I had to rate the importance of these three treatments, I would say: (1) Infrared sauna, (2) Equilibrant, and (3) Thymic protein, although, #1 and #2 are very close.  I'm not sure that either the sauna or the Equilibrant would have worked without the other, but that's only a hunch.

It seems that every PWME responds to different treatments depending on the etiology of his/her particular brand of ME/CFS.  So this trifecta certainly won't work for everyone, or even anyone but me.  And of course there's the usual caveat that I'm not a doctor and you shouldn't rely on any advice from me in forming your own treatment plan.  But maybe this will give others some ideas of possible treatments to discuss with their own doctors.

A rough graph of my improvement compared to the initiation of 'the key 3' treatments


Now, if you had told me a year ago that I would achieve this kind of moderate improvement, I would have been ecstatic.  But I think it's human nature to always want more.  I'm of course not satisfied, and I probably won't be unless/until I can do everything I used to do.  However, if ME/CFS has taught me anything it's patience.  If I have to bide my time and continue with my supplement/sauna routine for several more years before I (hopefully) take another step forward, I will gladly stick with it.  

Finally, I should mention that these three treatments aren't my only treatments.  I still take a number of other supplements, but I believe that these supplements are less important.  What I don't know is if they somehow made the improvement possible by, again, "laying the groundwork."  Over time, I'll have an opportunity to experiment with slowly cutting back on some of these other supplements and gauging the results.  And of course, I'll report what happens here.  

As always, thank you for reading, and I wish you the best of luck on your journey toward improved health.  As you know, except for a handful of dedicated and dare-I-say saintly doctors, we're mostly on our own with this complicated illness.  I wouldn't have found any of these three treatments without the knowledge I picked up from the message boards and blogs (that's how I learned of Dr. C too).  So I encourage others to share what works for them if/when they find something.  

7 comments:

  1. This comment has been removed by the author.

    ReplyDelete
  2. Hi Patrick,

    As I've said before, I love these summaries of what've been working for you.

    I've been feeling quite well since November, and one thing I attribute this too is focusing on my Thymus gland. So it's very cool about you mentioning Thymic Protein.

    I've been doing this by taking Thymus extract supplements, as well as rubbing Castor Oil over the area where the Thymus gland is located (center of the rib cage).

    I've made a lot of other changes, but the Thymus seems to be very important for me.

    Can I ask you what supplement you're using for the Thymic Protein?

    ReplyDelete
    Replies
    1. Hi Greyson,

      That's great to hear that you've been feeling better lately. I really hope it continues for you.

      For Thymic Protein, I use ProBoost Thymic Protein A. http://www.amazon.com/Proboost-Thymic-Protein-A-30PK/dp/B0002HS80K

      Do you use a different brand? If there are other brands, I'm not even aware of them.

      Regards,

      Patrick.

      Delete
    2. There are a few different brands of Thymus supplements, Nutricology and Allergy Research are just two that come to mind. If you go to iherb.com and search "Thymus" you'll see some more brands.

      I've wanted to try Proboost, but it's so expensive, and not easy to find. But I'm sure I'll try it one day soon.

      The Thymus supplements I've tried are basically freeze dried and powdered Thymus glands, which is a bit differnt than Proboost which I think clones the Thymus cell of one cow??

      Delete
  3. Hello Patrick,
    I am so glad I found your blog! I could copy-and-paste a lot of your enteries and they would be my husband's story too. He has just started (day 5) on 1 Equilibrant a day, I am hopeful! What kind of infrared sauna are you using? I see some portable ones on Amazon, I wonder if they are any good?
    Also, I found your post on Th1 and Th2 interesting and enlightening. As part of an anti-inflammatory diet we were drinking loads of green tea and swallowing turmeric sometimes twice a day! You have given me a lot to think about.
    Thank you for your story and introducing me to Dr. Chia's videos.
    Linda

    ReplyDelete
    Replies
    1. Hi Linda,

      I'm glad you found my blog too. It's comments like yours that keep me going on days when I wonder why I bother blogging.

      The portable sauna I bought is by TheraSage, a company based out of Florida. It was a little more expensive than the others of the same style but my doctor recommended it, and the quality is pretty good.

      I hope your husband is having some success with the Equillibrant. I really wasn't able to tell for sure that it was working until after I was taking 6 pills a day for a while -- because each time I went up in dosage, I felt flu-ish for a while. Good luck to you both. Thanks for stopping by.

      Patrick.

      Delete
  4. Thanks for the info. I ended up ordering the less expensive model (we are broke artists), it shipped today, we'll see. He is now taking 3 Equilibrant a day, no major change yet. He always feels fluish, so it is hard to say if there was much of a change when he increased the dose.
    I am thinking of trying the Thymic Protein as well.
    We laugh reading your blog because it is everything we always say. Your post about the stages of CFS/ME is perfect! We have been trying to figure this out for 5 years, in February he was finally "diagnosed" with it and since then we have been on a perpetual search for answers. I felt like everything we tried to this point was dealing with symptoms, I am hoping that Dr Chia has the right idea trying to kill the root cause.
    Obviously, we (and you) have been on every supplement imaginable, but I just ordered magnesium oil spray (for after sauna) and B2 (to help with headaches).
    Keep it up!

    ReplyDelete