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

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

Wednesday, August 13, 2014

Prostatitis post, part 2

Every once in a while on this blog I write a post that, frankly, is more for my own benefit than anyone else's.  I still post publicly just in case anyone else can be helped by it. This is one of those posts.

Whenever I face a new or worsening symptom, or a possible co-morbid condition, like prostatitis, I like to make a list of all the things I suspect may have contributed to the onset of the symptoms.  That way, the next time the symptoms appear, I can refer back to the list and see if there are any similar circumstances.  I'm looking for factors other than ME/CFS, because there was obviously an additional trigger or triggers.  I've had ME/CFS for over three years but have only had two incidents of prostatitis during that time.

So here's the list of suspects.

1)  In preparation for the camping trip, and during and after the camping trip, I did a lot of packing and unpacking of the car and moving boxes and semi-heavy items.  What's interesting is, the two prior times that I got prostatitis (once in 2005 and once in 2013), was around the time I was moving residences and packing boxes.  Is there something about packing, lifting and moving that is causing protatitis?

2)  On a camping vacation last week, I drank both coffee (quite a bit) and alcohol (in small amounts), which I don't do regularly.  In fact, I do them rarely.  The Prostatitis Foundation website states that both coffee and alcohol can aggravate prostatitis.

3)  Another suspect: My tri-weekly injections of bioidentical Testosterone as an ME/CFS treatment.  Some internet sources say that testosterone levels, and in particular, DHT (testosterone's byproduct) are associated with prostatitis.  On the other hand, many more internet search results state that the supposed DHT/prostatitis connection has been debunked.  My urologist also told me back in 2013 that the testosterone injections were not related to prostatitis (and he is NOT the doctor who prescribed the injections, so I have no reason to distrust him.)

4) I did some very light yoga around the time the symptoms appeared, but I think the symptoms actually started a day or two beforehand.  I can't be sure...  This is one instance where my daily health chart failed me.  Because the symptoms started so gradually, I neglected to note them when they first started, so I don't know the exact date.

5)  Something unknown or unexpected like viral reactivation?

Sunday, August 10, 2014

The Possible Connection Between Prostatitis and ME/CFS

The prostatitis that I wrote about in November and December seems to be back.  This is not a surprise. Prostatitis is inflammation in the prostate that can sometimes be caused by a bacterial infection, but is more often caused by general inflammation of the prostate.

My November-December episode of prostatitis wasn't the first and the urologist told me it probably wouldn't be the last.  He said that after one contracts prostatitis, it tends to slowly become a chronic condition.  It may be a lifelong companion.

The question in my mind has been: is this related to ME/CFS, or just another sign of getting older?  I believe it is probably related for several reasons.  First, I never had chronic prostatitis before ME/CFS.  Before, I had one bad episode of a urinary tract infection, and would occasionally get some mild symptoms similar to what I experience now--but nothing as severe as this new pain.  

I now believe those early, mild symptoms were warning signs.  I believe they were signs that the underlying cause of my ME/CFS (a weak immune system) had been building toward a tipping point for some time before I came down with ME/CFS. (More on why I believe that in a future post) 

As I researched prostatitis, I began to see many familiar themes from the ME/CFS community.  Prostatitis is normally a chronic condition of unknown origin.  It tends to baffle doctors.  Doctors (even urologists) often become frustrated with chronic prostatitis patients because they don't know how to solve the patients' problems. (Prostatitis Foundation).  Sound familiar?  

Prostatitis is essentially a disease of inflammation.  While a small percentage of acute prostatitis cases are caused by bacterial infection, most are caused by inflammation of unknown origin. (Prostatitis Foundation).  

Here's a list of the possible causes of prostatitis, from the Prostatitis Foundation website.  I've highlighted the areas of cross-over from ME/CFS:
  • Bacterial infection,
  • Auto-immune response or disordered immune response,
  • Neuromuscular, tension or physical injury problem
  • Additional possible causes:
    • a uric acid disorder,
    • prostate stones,
    • a urethral stricture,
    • a rare tumor,
    • prostate cancer,
    • benign prostatic hyperplasia (BPH, non-cancerous growth of the prostate),
    • a food allergy,
    • a yeast infestation,
    • a specific yeast problem from the Genus Candida,
    • or a virus. (Prostatitis Foundation)
Just as with ME/CFS, since the medical community is of relatively little help in dealing with chronic prostatitis, many sufferers turn to self help techniques.  Self help often includes dietary supplements and the exchange of information with other patients in online forums.  

And then there's this quote from the Prostatitis Foundation website:
There's growing interest in the idea that prostatitis may be caused by immune disorders or allergies, in which case treating the inflammation is the way to go. ... There are research trials underway with the drug Elmiron, which addresses auto-immunity and mast cell responses. And antibiotics themselves have anti-inflammatory benefits. (
Then there is the Candida connection.  It seems both ME/CFS and prostatitis often go hand-in-hand with Candida overgrowth, which points back to immune dysfunction.
A significant number of men with chronic prostatitis have found relief ranging from a cure to welcome diminution of symptom severity after following an anti-candida regimen. .... 
It is uncertain whether a yeast overgrowth in the gut lowers general body resistance by attacking the immune system, thereby allowing dormant bacteria in the prostate to re-activate (proven science: [Candida] toxins disarm elements of the immune system), or whether the effects on the immune system result in non-bacterial inflammation to the prostate tissue (and often the sinuses as well - another poorly perfused part of the body), or indeed whether the organism actually infects the prostate tissue directly....
Here follows a shortened list of the associated symptoms which typically accompany a CA-induced prostatitis ... painful lymph nodes ... unexplained fatigue ... always catching colds and flus ... mental confusion, fogginess ... cold hands and feet ... (
All this gives rise to the possibility in my mind that prostatitis is yet another related or "co-morbid condition" with ME/CFS.  The good news is that, before ME/CFS, I would have probably visited a couple of doctors, who would probably shrug and fail to offer much help.  At that point I would have simply accepted that this condition is just a new fact of life.  Now, I'm much more motivated and have the tools and general understanding of the inflammatory conditions in my body to actually do something about it.

Just like with ME/CFS in general, I'm going to start trying various treatments (both self-help and through doctors) until I find something that works best for me.  But I know now not to rely solely on my doctors.  I know to take responsibility for my own care and to research and understand the condition as well as I can... and most importantly, to be a partner with my doctors, not just a blind follower.  I'm optimistic that, while I may not find a cure, I'll find ways to gain at least some measure of control over the symptoms.  In the end, that's all I can ask for.

End Note: For those thinking that I may have prostate cancer, I have had a couple of digital rectal exams [DRE's] in the last couple of years, and all were unremarkable.  But, from what I've read, one must always rule out the possibility of prostate cancer when he has symptoms of prostatitis.

Tuesday, July 22, 2014

Minor Differences in Generic Rx's Can Have Major Effects

About a month ago, I mysteriously started experiencing serious stomach pain.  I haven't had significant gut issues since my acute phase, before I changed my diet.  This new pain got to the point where it became unbearable and I couldn't think of much else.

Again, I turned to my daily health chart to see if I could find answers.  The only significant change I noticed near the time of the onset of the stomach pains (four days earlier) was that I had switched brands of generic Valacyclovir.  For more than a year prior, every time I went to the pharmacy, they would dispense a particular generic brand.  This one time, all of a sudden, the bottle looked different and I was given a different brand.  I didn't think anything of it.  I figured all the generic brands were pretty much the same....until 10 days later when I noticed a possible connection on my health chart.

To test whether the new brand was actually responsible for the pain, I took a "holiday" from Valcyclovir for a few days.  The stomach pains subsided.  As soon as I resumed Valacyclovir, the pains returned.

For the past few months, I had been meaning to change pharmacies, so this was the motivation I needed to make it happen.  I switched from a national chain to a local compounding pharmacy.  I told the new pharmacist about my experiences with the different generic brands.  He said it's fairly common. Obviously, he said, the active ingredients in the generic brands are the same, but each generic brand contains different "fillers."

My refill with the new pharmacy was with a third generic brand--one I'd never tried before.  I've been taking the new brand for about a week and it hasn't caused any trouble.  Since that experience, I've searched the internet for further information on this issue, and it appears to be a fairly common problem, not only among brands of Valacyclovir but any type of drug with multiple generic options. The lesson I learned is that, just because a generic drug doesn't agree with me, doesn't mean that drug is off limits.  I may be reacting to an inactive ingredient.  I suppose the only way to find out is to try another generic brand ... or Google it!

Friday, July 18, 2014

Did we just take a HUGE step toward a unified model of ME/CFS?

It seems as if every day there's an article discussing new research findings and treatment theories in the ME/CFS blogosphere.  In the first year or two of my illness, these articles excited me.  I read every single article and blog post about new theories and treatments.

Then, after a while, I started to realize that most often nothing becomes of these promising leads.  We never hear about them again.  In the past year, I reverted to simply skimming the headlines and surmising the gist of most articles.  I look for anything that sounds like a true breakthrough...or anything that "connects the dots" with prior research.

After this year's IACFS Conference, I felt conflicted again.  All the information I'd absorbed sounded so promising, and yet, we still had dozens of different theories, each of which only seemed to explain a portion of the disease.  There was no serious attempt yet to synthesize the various research findings into a unified model.

Here's what I wrote after the IACFS Conference:
The next big breakthrough in ME/CFS research. ... will be the first. 
As sobering as that is, we can't point to any one finding over the last 30 or 40 years that truly qualifies as a "breakthrough."  I'm referring to a breakthrough on the order of the XMRV discovery....had it turned out to be correct.   
We have nothing like that.  So when I read accounts of the IACFS conference, or the daily articles that make the rounds in our blogosphere, I have mixed feelings.  A few dozen dedicated researchers are working on their pet theories and all seemingly churning out important findings.  It all sounds positive...we are surely making "progress"!  Right?
But it raises the question: Is one of the researchers correct, and the others wrong?  I think, almost certainly not. There are too many confirmed physiological abnormalities found in ME/CFS patients that are, by now, beyond debate.  In the immune system alone, there is a constellation of problems, and that's just one part of the disease.  We know with absolute certainty we're dealing with a complex multi-system disorder. And so each of these dedicated ME/CFS researchers is probably focusing on what will turn out to be but a small piece of the puzzle. 
When a true breakthrough finally occurs, it will look like one of two things:  Ideally someone will suddenly discovery the etiological cause--the one event that sets off the long chain of subsequent physical derangements.  Then we'd have a true focus for treatment research. 
But barring such a "homerun" discovery, true breakthroughs will begin to occur when someone with a mind toward the "big picture" starts making connections between the various derangements.... and proving them.  Someone has to start linking these findings in a causal chain so that we can begin to create a comprehensive model of this impossibly complex disease. 
It appears that one of our beloved ME/CFS researchers is finally starting to do just that--to look at the big picture and develop a unified theory.  If you haven't yet read Cort Johnson's article summarizing Dr. Lucinda Bateman's recent pronouncement, you really should.  The one-sentence version is that Dr. Bateman has developed the beginnings of a unified theory, where ME/CFS starts with inflammation in the limbic part of the brain.

It's true that others have proposed general theories before about how everything fits together, but I don't believe it's been done with this level of clarity and confidence -- and by someone who is respected as a leader in ME/CFS research.

I've been a strong proponent on this blog that a unified theory will start and end in the brain--the hypothalamus specifically. (Examples 1, 2)  That of course isn't my theory, but it's the one that always made the most sense to me because it is the only one that could explain all the myriad symptoms and derangements we experience.  Bateman is now saying it's not just the hypothalamus but it's inflammation in the entire lower portion of the brain.  More importantly, she's gone beyond the stage of idle speculation and has actually coalesced the research findings of her colleagues into a well thought-out hypothesis that makes a lot of sense.

What We Need to See Next

Obviously we're still a very long way from solving this disease, but here are a few things I'd like to see happen to push us closer to that goal.

1.  Naturally, the hypothesis needs to be tested... extensively.  This will be a long and expensive process (maybe a decade or more?) but I truly believe that it will be confirmed, if not refined a little in the process.  

2.   The theory needs to be expanded to explain some of the other derangements we see in ME/CFS patients, especially in the immune system.  Dr. Bateman speaks of auto-immunity (overactive immune response).  But what about other aspects of the immune system that are under-active in ME/CFS patients (specifically Natural Killer Cells, and usually, one or more IgG subclasses)?  Any unified model must explain immune deficiencies too.

3.  Where do pro-inflammatory cytokine storms fit?  Are they upstream or downstream of the brain inflammation?  Do the pro-inflammatotry cytokines cause the brain inflammation, or does the brain inflammation lead to immune dysfunction and, thus, cytokine storms?

4.  Of course, it would help if someone could actually explain the external cause of ME/CFS, but I suspect we already know about as much as we'll ever know.  It's generally accepted that there are probably many doorways into ME/CFS: viral, bacterial, stress, traumatic injury, genetics, exposure to environmental toxins.  I think it will be a very long time before we're able to be more specific than that.

5.  Now that someone has developed a credible unified theory that actually makes a lot of sense (in my opinion), and after it's been tested, we've got to ensure widespread support for it from other ME/CFS experts.  We've got to somehow get all or most of these experts pulling in the same direction.  That step would require the concerted effort of an organization like IOM, or it would require one of the big-name researchers like Bateman to become a leader and rally the others behind her (if that's even possible).  This would likely be a very long process too.

6.  After general acceptance among ME/CFS researchers, this new model would expand and gain general acceptance among ME/CFS clinicians, and from there, spread to the greater medical community in general.  True, acceptance in the general medical community seems like a pipe dream now, but if there were a complete model that explained all of our symptoms and could be tested and confirmed, it would gain traction fast.  

(Remember the trajectory that the XMRV theory was on?  Imagine how quickly that knowledge would have spread among the general medical community if the findings had been confirmed.  They'd already be teaching it in medical school).

7.  I believe that only after there's a model of ME/CFS that truly gains acceptance in the general medical community will we ever see the major drug companies take a serious look at this disease and begin to develop drugs, in earnest, specifically for ME/CFS.   

Wild Speculation About the Future

When you consider all those steps, it can be a little discouraging.  Even if Bateman is 100% correct, it could still take as long as 20 to 30 years or more for these steps to occur.  Then again, sometimes progress doesn't occur in a linear fashion.  Progress sometimes builds momentum exponentially.  

Looking at the epidemiology of other diseases, often when one key connection is made, others are made very rapidly afterwards.  Imagine what would have happened had XMRV been confirmed.  Research money would have started pouring into our bare coffers.  Drug companies would have been racing to beat each other to the market with an XMRV anti-viral.  Our small circle of ME/CFS researchers would have likely expanded as other virologists and epidemiologists all over the world would have turned their attention to ME/CFS.  Progress would have accelerated very quickly for us. 

At any moment, we're just one breakthrough away from a rapid acceleration of progress.  Could Bateman's theory be the breakthrough?  Probably not because it's not a research finding...yet.  So far it's just a hypothesis.  But if and when it is tested, I believe it has the best chance yet of any hypothesis we've seen of being the breakthrough.

For now I'm simply glad that someone in a lab coat is finally looking beyond their own pet theory and trying to make sense of what their peers are doing too.  More of that, please!

Monday, July 7, 2014

3 Year Anniversary - Looking Back

Somehow, almost an entire month has passed since my last post.  I'm not sure how that happened.  In the meantime, my 3-year ME/CFS anniversary  has passed.  These so-called "sickiversaries" make me reflect on how I've progressed and changed since first getting ME/CFS.

As I wrote last year, I dreaded the 3-year anniversary because researchers have noticed fundamental differences in the physiology of patients who have been ill with ME/CFS for greater than 3 years.  For example, patients of 3+ years typically have cytokine profiles that are different from newer patients.  I've also read that if a patient has any chance of recovery, they will usually recover within the first 3 years.  After that, the chances of recovery fall significantly.  All this suggests that something occurs at about the 3-year mark that changes the course of ME/CFS for the worse.

For now, however, I am not too worried about having passed the 3 year mark because I have been doing relatively well lately.  It's always easy to brush off these types of concerns when you're doing well, isn't it?  Over the last 2 or 3 months I have been doing well enough that at times I've even wondered, "Am I in remission?"

The answer to that question is an emphatic NO.  Every time that question arose in my head, symptoms would flare and I would be reminded that I am still quite ill in many ways.  But it's remarkable that the question even enters my head sometimes.  During my first and second year, I would have never entertained that thought, even for a second.

As regular readers may know, I keep a daily health chart, and I calculate an average of my overall daily rating at the end of each month.  When I charted my monthly health averages over the past 3 years I saw a very slow and steady rise.  The increase was so slow and steady that it was imperceptible from month to month as I lived through it.  I could only see it after graphing it visually.  But I know that it's real (not simply a shift in my rating sensitivity) when I think about certain activities that I was unable to do two years ago and that I am able to do now.  For instance, I am able to perform maintenance work around the house and garden without much, if any, consequence.

Yet, there are still many signs that I am fundamentally ill, particularly in my immune system:  My natrual killer cell activity is still pathetically low.  My IgG subclass 3 is still low, out of range.  I still have ongoing Candida overgrowth, another sign of a weak immune system.  And I still suffer frequent sore throats.  When these sore throats arise, my tongue swells so badly that it becomes difficult to talk. I still experience shortness of breath on a regular basis, although that symptom has diminished over time.

There are many other symptoms that I still experience regularly--too many to mention here.

Post exertional malaise (PEM) remains a problem, but the threshold of what I can do before I trigger PEM has risen over time.  During my first year, PEM could be triggered simply by standing for too long, or by walking a few hundred yards.  Now I can do most activities of normal day-to-day life without triggering PEM.  However, if I venture into cardiovascular exercise, I will crash with PEM.  (I was reminded of this just last week when I got cocky and decided that I was well enough to handle a bike ride.  Three days later I crashed badly with that unmistakable PEM feeling.  Luckily, the crash only lasted two days.)

So my challenge now is to maintain my current level of health and possibly even give myself a chance to improve further.  The main idea is not to do anything that will make me regress.  That means, I must fight the urge when I'm having a good day to go crazy and do everything, overwork myself.  I have to always remember that blood tests and my own body are telling me that I'm not "OK" even though I may feel OK sometimes.

Some readers will of course want to know how I improved.  This is a really difficult question to answer, and the honest answer is that I don't really know.  I will try to formulate a theory in future posts, but my responses will be educated guesses at best, and I don't think my improvement was attributable to any one treatment.

I continue to believe that improving with ME/CFS is a combination of luck and, sometimes, putting dozens or hundreds of puzzle pieces into place before anything becomes clear.  This disease is simply too complex and multi-factorial to expect much of a difference from one or two treatments alone.  But then again, I've known many patients who have gone to much greater lengths than me to find improvement, and they only got worse for their efforts.

My suspicion is that improvement is often a matter of luck: perhaps it's stumbling on the right combination of treatments, in the right order, to match each of our own unique etiologies.  And even then, sometimes improvements are fleeting.  It's also clear that what works for one patient, usually doesn't work for the next.  We are clearly divisible into subclasses, in my opinion.  Such is the frustrating nature of our disease.

Wednesday, June 11, 2014

Update on my Adderall use: a big help...used cautiously

I rarely do this, but I am recycling a post I made on a forum for this blog post because I think it's useful enough to share with a wider audience.  This post was in response to a question by another poster who asked if anyone was doing a self-help version of the K-PAX trial.  

A supplement manufacturer, KPAX, is or was conducting an ME/CFS drug trial in which they combined the stimulant Ritalin (a drug typically used to treat ADD and ADHD) with KPAX's own immune stimulating supplement.  Some well-known ME/CFS researchers have theorized that the combination of Ritalin and certain other mitochondrial-support supplements (which are found in KPAX's supplement) may have a "synergistic effect," boosting the immune system and mitochondrial energy.

My take on this:
I have been and continue to be unwittingly doing a similar protocol. I happen to be taking all the ingredients in the KPAX Immune Support supplement independently (but not packaged exactly as KPAX does). Instead of Ritalin, I'm using Adderall. My understanding is Ritalin and Adderall are closely related and used for the same purpose, but I don't know if they would be considered interchangeable for the "synergistic" purposes of the KPAX trial, so take this with a grain of salt. 
Also, I don't take the Adderall every day...maybe 2 or 3 times a week. At first, the point of the Adderall for me was to cut through the brain fog. Then I noticed that every time I took it, I had a way above-baseline day. But I figured that was because Adderall is a stimulant and is therefore making me feel* like I have more energy without actually improving my health.  
Then after a while I started to noticed that if I was semi-crashed, or had inflammation, or shortness of breath, or flank pain, or sore throat or any of the many other symptoms I get with ME/CFS, they would go away or be greatly reduced when I took the Adderall on top of the other mitochondrial supplements (which I take every day.) I also noticed that the health & energy improvement usually continued the next day, even after the Adderall had long since worn off.  
So now I'm starting to suspect that the Adderall may be doing more than just giving me the illusion of feeling better. I think it may actually be making me better. I am, of course, proceeding very cautiously but I love having Adderall in my bag of tricks. Basically any time I need or want to have a good day, I can have one instantly. The temptation is strong to just take Adderall every day, but I'm not ready to go that far.
To be clear, I am not advocating the use of Adderall, I'm just relating my own experiences recently.  Adderall is still a heavily controlled substance and the risk of addiction is apparently strong with this drug.  Other patients have also expressed the concern over potential adrenal burnout if an ME/CFS patient become too reliant on Adderall.

I should also point out that I've never tried Adderall when I'm in a truly deep, serious crash. Instinct tells me that would not be a good idea.  Also, Adderall has been useless to me against the types of crashes that are due to me catching a cold or another bug, but it has been somewhat effective when I get a flare-up of regular ME/CFS symptoms.

Wednesday, May 21, 2014

New Blood Test Results: A Mixed Bag

I had my latest appointment with my other ME/CFS doctor yesterday, Dr. W.  My appointments with Dr. W tend to be fairly routine at this point: we check my blood test results, re-fill prescriptions as needed and sometimes tweak my supplements and Rx dosages.  The most interesting aspect is receiving my blood test results and following the progress of treatments with actual data.

This time, we tested some key immune markers that hadn't been tested in nearly two years, namely immunoglobulin (IgG) subclasses, and (a more indirect indication of immune health) candida antibodies.

As I've written about before, over the last two years I have gradually increased my "baseline" health.  The improvements have been moderate, but certainly noticeable.  It's definitely something more than just "getting used to it," although that is a factor too.  The improvements have been nothing world-beating, but then again, I would consider it a victory even if I managed to hold steady and not slide backwards.  I read about so many of my fellow patients who describe a long, slow slide backwards into poorer and poorer health, and I think that any patient who can at least maintain their baseline should be relatively happy.  A slight improvement, like mine, is something to be celebrated.

At the same time, I've been looking for some indication in my blood test results to explain why I've been feeling a little better lately.  I continue to be disappointed.

IgG Subclasses

I first had my IgG subclasses tested back in April, 2012--over two years ago.  While subclasses 1, 2 and 4 were in the normal ranges, subclass 3 was low (12, with a reference range of 22-178 mg/dL). Now two years later I had it tested again, after years of immune modulating supplements, probiotics, optimal Vitamin D3 levels, and a number of other treatments designed to boost or modulate my immune system, like Equilibrant, ImmunoStim, and others.  My new results: 12 again.

Dr. W states that my three other IgG subclasses are also low, although technically not out of range.  In each case, the numbers are in the lower third of the reference range, but this is nothing that would strike me as alarming.  Those numbers also remained about the same from 2 years ago.

Candida Antibodies

My Candida antibodies have actually gone back up (that's bad) after going down for a while...  While candida isn't a direct measure of immune health, candida overgrowth is a solid indicator of a weak immune system.  Candida overgrowth simply doesn't occur in people with healthy immune systems.

I used to test my Candida antibodies much more frequently, but my doctor stopped once it became clear that I had a good anti-Candida diet in place and I was also taking daily oral Nystanin for a while.  Here are my results from late 2011 and early 2012, alongside my recent results in bold.  The test measures three types of antibodies for a complete picture (IgG, IgA, and IgM).  Anything 1.0 or over is considered "out of range" on the high side:

              Dec. '11     Feb. '12    Apr. '12  May, '14
IgG         1.3            1.2            1.2         1.7
IgA          3.7            3.3            2.6         3.1
IgM         1.4            1.3            1.2         1.0

I supposed I could view these results either positively or negatively. On the one hand, I had been taking Nystatin at the time of the middle two tests (Feb and Apr. 2012).  Now, I haven't taken Nystatin for over a year and yet two of the three antibody types (IgA and IgM) are lower than the average of the prior three tests. Could this mean that all my diet and immune modulating work has helped?

On the other hand, IgG antibodies for Candida are higher than they've ever been, including when I was in my acute phase.  IgG and IgM antibodies, I believe, are found in the blood. You don't want to see those numbers go up because that could mean candida is becoming systemic. Candida overgrowth in the gut is one thing, but real problems begin when it becomes systemic and enters the blood stream in significant amounts.  It is not overly encouraging that IgM antibodies continue to drop, as those antibodies are usually most present in an early infection and one would expect them to wane as a long-term infection continues.  (Source).

I will be trying a month-long course of Diflucan to try to stop the Candida.  Unlike Nystatin, Diflucan can actually clear candida from the blood, not just the digestive tract. The downside is that it is harsh on the liver and must be used sparingly and under close medical supervision.

These results are just a little frustrating because I have been pretty damned disciplined about my diet and taking probiotics.  I would have expected better results.  There's not much else I can do (Diflucan is not a permanent solution), and feeling like you don't have any control over a bad situation is the worst feeling of all.  (I know, "welcome to ME/CFS," right?)

                                                                      Other Results

While not exactly related to immune function, I was shocked that my glucose tested high at 102 (range 65-99).  I was fasting on the morning of the test, and I have been a saint about sticking to my Paleo diet.  Genetically I tend to have high blood sugar, but again, I don't know what else I can do to control this.  I know there are blood sugar lowering medicines, but I don't want to add another pharmaceutical. 

Blood ammonia levels were also high 50 umol/L (normal range < or = 47).  High ammonia levels is a problem according to Dr. Yasko and her methylation protocol.  Now I have to take a couple steps back in that protocol as well. 

My Thoughts

It's not that I haven't seen any progress in these or previous blood test results.  Results like vitamin D3, thyroid, and testosterone levels have been brought back to close-to-optimal levels.  And perhaps this explains my slight improvement.  But honestly, I won't be happy unless/until I see improvement in my immune system.  Like many, I believe that immune dysfunction is at the heart of ME/CFS.  

While I know better, sometimes I had allowed myself to imagine that these slight improvements meant I would slowly climb out of this hole and get better and not have to worry about if I'll be able to play with my daughters and go on vacations and continue to work, etc.  

As Dr. W says, once you have Candida overgrowth, it is a life-long battle.  "It's a nasty, lifelong companion" he always says.  The same may be true for my ME/CFS in general.  In the best circumstances, you can manage it and hopefully stave off a backward slide and maybe even improve some, but I'm not sure that actually correcting one's immune system to the point of being "cured" is in the cards.  

How do we reconcile that with those occasional articles that claim a certain percentage of ME/CFS patients "recover?"  (Example)  I think the answer is that the surveys that produce those results have different ideas of what it means to "recover" than I do.  Probably many of them would already consider me "recovered" because I am more functional than average ME/CFS patient.  I can do things.  

But I certainly don't consider myself recovered, or even close to it.  So that's the rub: a realistic goal for me is to seek to be as healthy as I possibly can, but not to have expectations of ever being able to be carefree about my health again.  The daily frustrations and unpredictability of this disease will always be there in one sense or another.  The threat of a major relapse will perpetually be my shadow.  My task is to carve out as happy of a life as I can within those parameters.  

The "realities" that I'm writing about here are not new to me.  I've known them for a long time and have probably written about them before in this blog.  But I find that I sometimes need to reset my expectations.  My blog is called Quixotic because I have a tendency to stay optimistic even in the face of information that tells me I shouldn't be.  That's fine, but my challenge is to keep that spirit while at the same time understanding the situation accurately on an intellectual level.  With ME/CFS, and many other diseases no doubt, there's so often a conflict between the spirit and the intellect.  True peace of mind comes when we find a way to balance the two.