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, September 17, 2014

The latest on my prostatitis

I wrote in my last post that the doctor switched me from Bactrim to Levaquin when the second course of Bactrim failed to bring the prostatitis under control.  I was prescribed a 10 day course of Levaquin.

On about the 8th day of the Levaquin treatment, my symptoms were still mostly unchanged.  I called the doctor again and he switched me to yet a third antibiotic: generic Omnicef (cefdinir).  Again, he prescribed a 10 day course.

By about the second day of Omnicef treatment, I began to feel some relief.  I'm about mid-day through the treatment now and I feel mostly normal "down there" -- maybe 95% of normal.  But, at this stage, I can tell that some symptoms are still hanging around at a low level.  I have the vague sense that if I stopped the antibiotics right now, the symptoms would come right back.

I am starting to realize based on my internet searched and conversations with other patients that prostatitis can be very tricky and hard to kill.  Sometimes it takes a month or two of antibiotics.

The good news is that, if you don't count the prostatitis, my overall health continues to be fairly good, as it was throughout the summer.  My baseline health continues to rise at an almost imperceptibly slow rate.  If it simply topped off right now and never got any better, I would probably count my blessings.  My bigger concern would be relapse, so I am generally continuing with the pacing, supplements, and diet that (I think) got me here in the first place.

Tuesday, September 2, 2014

Update on my prostatitis

A lot has happened since I last wrote about this in mid-August.  My baseline health has actually been pretty good lately (for an ME patient), but this prostatitis has been preventing me from getting the full enjoyment out of it.

A few day after my last post, I made an appointment with my urologist.  As predicted, he wanted me to immediately go on antibiotics.  I argued.  I said that I'd read 90% of prostatitis cases are non-bacterial. He rolled his eyes and chuckled (not in a condescending way - we have a good relationship).  He said that while it's true that not all cases of prostatitis are bacterial, it's a lot more than 10%.  Based on the fact that antibiotics seemed to cure me last time (arguably) he recommended them again.  I protested.

The doctor's said, "let's compromise.  I'll write you a 'script and you hold onto it and only redeem it if you get worse."  I agreed this was a reasonable plan.  Then we agreed on a specific antibiotic: Bactrim.  Doxycycline didn't work for me last November and Cipro is apparently the devil (according to others) and I don't want to risk tendon damage.

My plan was to wait a week and see where I was after doing "all the right things" according to the urologist: no caffeine (I rarely have it anyway), hot baths, and anti-inflammatories.

I lasted two days.

It turned out to be the right call because 3 or 4 days after I started the Bactrim, I felt almost 100% better overnight.  If it was just the anti-inflammatory affects of the Bactrim (as opposed to the bacteria-killing effects) I would have expected the improvement to be gradual and linear.  Instead, it was PAIN, PAIN, PAIN...nothing.

So I dutifully took the Bactrim 2x/day for the full 10 days (also with probiotics twice a day, of course). After the 10th day I felt good...for a few days.  Then it came right back.

I went back to the urologist and he prescribed two more weeks of Bactrim.  I started back on them after a 3 or 4 day break, which gave me some concern.  Wouldn't the strongest bacteria have survived and replicated, I asked?  The urologist waived off this concern without explanation.

Once back on the Bactrim, my symptoms mostly disappeared for a couple more days before coming roaring back.  So now I'm still on the Bactrim and the symptoms are back.  By the way, when I say "symptoms" I'm referring to the fact that when I sit down I get the slight sensation that I've been impaled on a wrought iron spike.

So this time I called my doctor back (I don't need another $45 co-pay, thanks), and he switched me to Levaquin - which is in the same scary family of antibiotics as Cipro, called fluoroquinolones.  The problem (according to Dr. Google) is that the prostate is a very isolated organ that is not easily reached by many antibiotics. The antibiotics in the fluoroquinolones family have a unique ability to penetrate tissue and get places that other antibiotics cannot.  That's also what makes them so toxic.

*Sigh*.  So it all comes down to this once again: live with pain and risk a spreading infection or take a fairly toxic antibiotic and decimate my gut flora.  Not an easy choice but I'm going to take my chances with the Levaquin.

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. (http://prostatitis.org/methods.html)
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 ... (http://prostatitis.org/fungus.html)
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.