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 4, 2012

Some good news - health rating chart

I haven't blogged in about two weeks, which is by far the longest I've gone between posts since I started blogging about a year ago.  Part of the reason for the long hiatus is that I've been doing particularly well health-wise lately.  I haven't had a crash since late September!  That is also, by far, the longest no-crash streak I've had since getting sick.  Several times in the intervening weeks, I've felt as if a crash was starting (like today), but it never fully materialized.  I hope the one that feels like it's coming on now also turns out to be a false alarm.

I honestly don't know what to attribute this uptick in my health to.  Perhaps its just one of the unexplained cycles of CFS.  The nearest change in my routine was the addition of the far infrared sauna, so it's possible that the sauna is responsible for this improvement.

I haven't updated my monthly average health ratings chart in a while, so I will do that below by adding averages for the months of August, September, and October 2012.

Please don't read too much into the fact that my ratings seem high - they are not on a scale of 1 - 100, although that was my original intent.  My rating scale is shifted higher than most patients because I originally set my baseline too high and didn't give myself enough cushion at the top end.  100% for me would really be about 115 on my rating scale below. (For an explanation of why my rating scale is tilted higher than others' see here.)

[Chart below updated 10/1/13]

Month         Avg. Rating.     Notes             
Sept.          72.34                             
Oct.           77.16                  
Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and 
                                          vitamin powder
Dec.           80.39               Officially diagnosed; changed diet to low carb; added  
                                          ImmunoStim, NT 
                                          Factor, and pro-biotics
2011avg.   76.43

2012
Jan.            79.07               Added T3 thyroid, pregnenolone, and magnesium
Feb.           72.73               Added methylation protocol; crashed twice due to low   
                                          potassium and flu
Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly 
                                          tried LDN
Apr.            75.50      
May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.
June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in   
                                         month; ImmunoStim ran out and is on back order.
July            81.12              Upped Equilibrant dosage to 6 tab/day, plus back on 
                                         ImmunoStim
Aug.           76.90              Started using far infrared sauna
Sept.          79.80              Heavy Metal Detox
Oct.            84.10  
Nov.           85.43
Dec.           83.80

2012avg.  79.74

2013
Jan.           85.55              Increased thyroid to 62.5 and resumed taking T.
Feb.          85.52              Cold in later part of this month
Mar.          85.03              Two colds this month, with sore throat and swollen tongue
Apr.           83.43              Cold earlier in month, then major crash near end of month
May.          81.61             Cold and crash from April continued into May.
June          85.73            
July           85.10              Second half of month had a bug that lingered.
Aug.          88.48              Implemented Yasko's "short cut" supps.
Sept.         87.96              Implemented Yasko's long route supps.
Oct.          85.97               Started month with stomach flu and then had light colds on
                                        and off all month
Nov.          86.86               Moved houses toward end of month.  Packed most of month
                                        and prepared old house for renting.  Very active month.
                                        Took Doxy and Cipro.
Dec.          87.35              Groin pain this month probably prevented an even higher
                                         number
2013 Avg. 85.69

2014

Jan.          88.16               Very busy this month with post-move activities.  Brain fog
                                        started coming back during last week of month.  Had cold
                                        that week too.
Feb.         88.60               Post-move activity started to slow down a little this month,
                                        but both kids sick
Mar.         86.55               Brain fog and leg numbness returned.  Not sure why.
Apr.          88.90               Brain fog and leg numbness went away when I suspended                                            
                                       taking B12 & folate.  Continued to get colds from the kids

May         91.16               Can't explain the sudden increase this month, except that I                                            
                                       always seems to do better in the summer.

June        90.33                A nasty cough and chest cold early in the month kept this                                            
                                       month from being higher

July         90.13                Two minor bugs this month but ended strong
Aug.        89.64                Prostatitis this month brought down my average
Sept.       90.70                Prostatitis a little better; cold near the end of the month
Oct.         86.93                Prostatitis continues; have been on 60+ days of antibiotics,                                                                                   which may have set immune system back.
Nov.        88.06                Prostatitis improving
Dec.        90.80                Good month despite some prostatitis

2014 avg.89.41

2015

Jan.        87.19                Two colds this month.
Feb.        89.14                Continuing pain in groin
Mar.        93.58
Apr.         82.80               Major setback this month; possible cold
May        85.12                Continued setback; headaches and brain fog
June       89.96                Experimenting with A-L Complex this month
July         90.74
Aug.        86.80               Lots of sniffles and shortness of breath this month
Sept.       89.23               Went back on ImmunoStim toward end of month; lymph node
                                        swelling went away, but SOB and sniffles continue
Oct.        86.96               Caught a cold in middle of month; SOB continues to be major                                                                                problem
Nov.       88.26                Caught another cold toward end of month. SOB and post-
                                       nasal drip continue
Dec.       89.51  

2015avg.88.27    

2016

Jan.       85.58  
Feb.       86.86               Began month still trying to recover from PC experiment; end
                                      of month was better. Resumed taking Testosterone (cream)
                                      toward end of month
Mar.      85.03                Flu began on 3/14 and symptoms continued to end of month
Apr.      88.16                Still recovering from cold/cough that began in March.
May      90.64                PND and SOB still main symptom.
June     88.90              
July      87.80                Shingles set in toward end of the month
Aug.     87.79                Shingles almost all month, resolved by end of month
Sept.    86.23                General viral symptoms all month: sore kidneys, lymph nodes,
                                     etc.
Oct.      90.64                Back on Equilibrant (6/d), Immunostim (3/d), and B Complex.
Nov.     88.06                Was having a very good month until 11/14 when I caught a cold
Dec.     89.48                Cold still lingered early in the month.

2016avg.87.93

2017
Jan.     86.93                 Active EBV infection back.  High IgM antibodies.
Feb.    83.32                 Still with EBV, plus bad cold, plus arbitration stress
Mar.    84.06                 Was still getting over cold early in month, then had bad crash
                                      late in month (return of SOB, PND, and new type headache.)

[Outdated:] As you can see, October was my highest average yet [that comment is outdated as I continue to update this chart], and was over two full percentage points above my next highest month (May, 2012).

The biggest thing mitigating my excitement over this streak is the persistence of strange neuro symptoms, especially a slight trembling in my right hand.  It comes and goes, but it's scary when it's there.  

As the month of October went on, I found myself being more and more active.  The flip side of this is that whenever I start to get too active, I sometimes feel a crash coming on.  So far, I have been able to back off just in time and avoid the crash, but I have to really watch myself.   As I write this, I feel the last week of activity possibly catching up with me.  I plan to take it easy today and see if I can keep the no-crash streak alive.


3 comments:

  1. Hi Patrick,

    Thanks for your posts. I have been following your blog for the past month or so.
    I am wondering if you have any thoughts on how much the equilibrant has assisted with your recent streak of 'crashless' weeks. I saw Dr. C a couple of weeks ago and am getting ready to start equilibrant/inosine.
    Did you get your stomach biopsied and analyzed by Dr. C's lab? If so, would you mind sharing the results? I had my biopsy analyzed and it was highly positive for enterovirus infection, so I am hoping the equilibrant will work for me!

    Take care,

    Anand

    ReplyDelete
    Replies
    1. Anand, I think it probably did help. When I started taking the Equilibrant, I noticed about a 5% improvement in day-to-day health, plus my crashes tended to be shorter and less severe. The improvement continues today. (The inosine did not work for me, but that's OK). I wonder if my recent crashless streak would have been possible without the Equilibrant sort of laying the groundwork. I suspect not, but it's only a hunch.

      I never did get my stomach biopsied because...and I forget exactly why...but Dr. C said it probably wouldn't tell us anything that would affect how he treated me. I may still change my mind yet, but for now I'm happy just using the Equilibrant as a immune modulator regardless of whether my underlying problem is an enterovirus or some other type of virus.

      Delete
  2. Hey, that's great news!!

    Hopefully, you will be back to doing well once you get past this episode.

    Sue

    Live with CFS

    ReplyDelete