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, October 12, 2014

Dr. C Recommends New Treatment Plan

I had my latest appointment with my ME/CFS specialist, Dr. C, on Friday.  My appointments typically open with the nurse running through a questionnaire that's designed to gauge how my symptoms have changed since the last appointment.  I mentioned the prostatitis (as discussed in my prior 5 posts).

Treating Acute Inflammation

When Dr. C entered the room, he zeroed in on the prostatitis.  We reviewed that I've been taking a variety of antibiotics for over 45 days without any lasting improvement.  He said the prostatitis is probably, in his opinion, a result of ME/CFS -- not bacterial.  Specifically, the virus is attacking tissue in the prostate.  He says he has several other male patients who have these same symptoms and that urologists typically have no idea how to treat prostatitis when it is not bacterial.  The urologists are completely stumped by viral prostatitis.  (This is consistent with what I've read on the Prostatitis Foundation website).

Dr. C recommended that I try a new course of treatment involving a combination of Interferon shots and Prozac for one month.  The interferon shots would be self administered, from a sample vial that Dr. C is willing to give to me.  (Normally interferon is $600 per dose).  I would split the one dose that he is giving me into 3 or 4 smaller doses and take them each a week apart.

At the same time, I am supposed to take 4 weeks of Prozac (yes, the antidepressant), which Dr. C states has an off-label use as an anti-viral medication that works against the Cocksackie B-3 virus (according to researchers at UCLA and others).  Apparently Prozac inhibits the ability of viruses to bind with the enzyme that they need to replicate.  They are also using Prozac now for Hepatitis C treatment.

For reasons that Dr. C did not fully explain, he stated that neither Prozac or Interferon alone would inhibit viruses significantly, but in combination, they have a synergistic effect.  He states that he has personally observed these two drugs inhibiting viruses through his own experiments.  (The details of this weren't clear).

Dr. C only offered Interferon to me because of my prostatitis.  Dr. C stated that as soon as one stops taking Interferon, the virus returns to its former strength.  Thus it is not a good long-term solution to ME/CFS, especially given the prohibitive cost of doing "maintenance doses" of Interferon.  But when one is dealing with an acute symptom like prostatitis, it can sometimes be helpful to try Interferon for a short time to see if one can bring runaway inflammation under control.

I haven't fully decided if I will try the experiment, but I think that I probably will.  It would be very difficult for me to turn down this opportunity at a free sample.  The only problem is that I have too many key work responsibilities to handle in the month of October.  Dr. C warned that Interferon can make a person feel awful (more than usual for ME/CFS patients) for the first few days after a new dose.  Among other things, it causes chills and high fevers.  (I'm supposed to take high dose Advil an hour before each dose of Interferon to help counteract these side effects.)  I can't afford to be out of commission for at least another 2 to 3 weeks.  So I think I will postpone the experiment until November.

If and when I do try this treatment, Dr. C thinks the treatment has a reasonable shot at alleviating my prostatitis pain.  If it helps, I am supposed to report back and, if he has any more samples, he will give me a second dose. The mere possibility of relief is exciting to me right now.

General ME/CFS News From Dr. C

Hepatitis C Drugs

For years Dr. C has been awaiting the arrival of two antiviral drugs that were in development for Hepatitis C.  He had strong hopes that the antiviral properties of these drugs would also be effective against the enteroviruses that (he believes) cause ME/CFS.  One of those drugs finally hit the market recently and has been tried on a few patients who have both Hep C and ME/CFS.  The drug was successful in treating the Hep C but did nothing against those patients' ME/CFS.

The other of the two Hep C drugs in development is supposed to hit the market next month.  It will similarly be tried on patients who have ME/CFS and I'll know the results by the time of my next appointment in March.   

"Exciting Time"

Dr. C described this as an exciting time in ME/CFS research.  He said we are getting closer and closer to understanding the double strand virus that causes it (or so he believes).  "There is a way to get rid of this," Dr. C said, "we just don't know quite yet.  But we're getting there."

Samples Sent to the CDC

Three weeks ago, Dr. C finally sent stomach biopsy samples (about 30) to the CDC at the CDC's request.  He has been trying to convince the CDC to try to re-create his findings for years.  No word on how long it will take to get results from the CDC.  Just after he sent the samples, Dr. C received a letter from the CDC stating that the testing of his samples will be delayed because the CDC is suddenly being inundated with requests to do something about the Enterovirus D68 epidemic.  

But, Dr. C seemed more encouraged than discouraged by the delay caused by Enterovirus D68.  He says that this new Enterovirus D68 epidemic has brought more attention to enteroviruses in general than he's ever seen in his career.  He thinks this may funnel large amounts of interest, money, and resources into enterovirus research, which has been largely ignored up until now. 

Dr. C also explained that California Senator Barbara Boxer has recently taken an interest in Enterovirus research because of the cases of paralysis from Enterovirus D68 that occurred at Stanford Medical Center.  He is circulating a petition to be sent to Senator Boxer to encourage her to push the NIH toward further research into the chronic effects of enteroviruses.  (She has already written one letter to the NIH).  His concern is that interest in the acute affects of enteroviruses won't translate to interest in the chronic affects.  He wants to piggyback on the momentum created by the acute affects of D68 to generate interest and research into chronic enteroviral affects.    

What Strains of Enterovirus Cause ME/CFS?

With all the news coverage generated by Enterovirus D68 recently, I had been wondering whether Dr. C had ever identified, specifically, which enteroviruses he believes cause ME/CFS.  I couldn't believe I've never thought to ask him this before. 

His answer:  "Most commonly, the Cocksackie B viruses: B-3 and B-4.  Then probably Cocksackie 2,  Echovirus 6, Echovirus 7, Echovirus 9, and then much less: Echovirus 11."  He also said "there's a whole bunch of these guys we can't identify."  

(Interestingly, I have been tested for Cocksackie B twice.  One test was positive for B-3 but not B-4, and the other was positive for B-4 but not B-3.  This doesn't give me a lot of confidence in these tests.)

Thursday, October 9, 2014

My Prostatitis - Probably Not Bacterial After All

I went back to my urologist about two weeks ago and told him that the prostatitis was still there after a month of various antibiotics, just as bad as ever.  It tends to wax and wane, but mostly it just hangs around.  We reviewed the fact that the Bactrim didn't work, the Levaquin didn't work, and the Omnicef didn't work.  I suggested that it might not be a bacterial infection.  He said he's not convinced of that.  So as one final measure, he prescribed an additional month of Doxycycline.

Well, I'm about two weeks into that month-long course of Doxycycline, and the prostatitis is just as bad as ever.  I'm now convinced that this is not a bacterial issue.  Something tells me this has to be related to ME/CFS.  When my body-wide inflammation gets worse, i.e. a crash, the prostatitis gets worse.  I'm starting to accept that fact that this issue might not go away any time soon--that it might be another long-term symptom that I have to deal with as part of ME/CFS.

If that's what it is, I can accept that.  The worst part of having a new symptom is the not knowing what you're dealing with.  Once I get that figured out, I have something to research and focus treatment on.  It's the not knowing that's the worst.

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 research 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!