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

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

Tuesday, December 29, 2015

Probiotics cured my sore throat...possibly

As an immune compromised person, I get frequent sore throats.  In fact, the frequency of my sore throats were one of the first signs that my immune system functioned differently than others'.  Certain sources of waterfor instance, a water cooler at workalways gave me a sore throat when my co-workers were unaffected.  About 1 out of every 10 times I drink a beverage with ice from a restaurant, it leaves me with a raging sore throat, even when others were fine.  (In researching it just now, I found that restaurant ice machines have been found to be dirtier than toilet water).  Because of the origin of my sore throats (water and ice), it is usually clear they are from bacteria, not inflammation from a viral infection.  I can also tell the difference between a bacterial and viral sore throat by feel; bacterial is more painful.

It happened again last week: ice from a restaurant left me with a raging sore throat.  I can usually predict within the first 24 hours if the sore throat will resolve itself, or if I will eventually 'cry uncle' and see my doctor.

For years, I felt frustrated that such a seemingly simple problem had no true remedy other than antibiotics.  I tried all of the "natural" remedies like salt water gargle, cayenne pepper gargle, honey, etc.  Nothing seemed to work.

(Recently I gave salt water another try and have had some moderate success with it.  I realized that I hadn't been using nearly enough salt in prior solutions.  It does seem to work if I use 4 or 5 heaping teaspoons of salt per cup of water.  The water has to be unbearably salty, to the point where I can barely gargle it without choking.)    

But in this particular instance (last week) not even the salt water was killing the sore throat.  I felt a little desperate.  I began to think about how, in the gut, probiotics can help turn the balance of bacteria from bad to good.  I had also heard of people using probiotic nasal spray to cure chronic sinusitis.  I had heard of others using probiotic toothpaste to address oral thrush.  So why couldn't probiotics be applied to the throat?

One of the brands of oral probiotics I'm currently using comes in capsule form, where the capsule can be taken apart and the probiotic powder inside can be accessed.   I laid back on the couch and opened my mouth.  I instructed my wife to pour the content of one Culturelle probiotic capsule onto my throat, tonsils, uvula (also known as "the hangy ball thing"), and generally all over the back of my mouth.  I tried to swallow some of the powder so that it would cover more of my throat.  

I waited.

I saw no real improvement during the following 3 hours until bedtime, but when I woke the next morning, the sore throat was gone.  This was very unusual for me.  Nearly always, the sore throat is at its worst in the morning, and improves somewhat throughout the day, only to worsen again at night.  I can't think of another time where I woke with my throat feeling better than at bedtime the previous night.

Granted, this is a "study" with a sample size of 1.  It's possible there's another explanation for the unusual recovery, but it's something for me to watch in the future.  I'll certainly experiment with it again the next time I have a bacterial sore throat.

Please understand that I'm NOT recommending that anybody else try this off-label use of probiotics. I took a risk and it worked for me this one time, but it's possible it could be dangerous for someone else.  

Sunday, December 13, 2015

Western Blot test says I have Lyme Disease. What?!

As I've written, I hired a new doctor about a year ago (Dr. M).  My goal was to start fresh and see if I could improve further with new theories of treatment.  My new doctor is, among other things, a so-called "lyme literate medical doctor" ("LLMD").

Ever since my second appointment, Dr. M has stated her belief that I may have chronic Lyme disease and its common co-infection of Babesiosis.  Babesiosis is another tick-born disease that is often transferred to the infected patient along with Lyme disease by the same tick bite.  The suspicion of Babesiosis was based on my shortness of breath and the periodicity of my symptoms.  Apparently Babesiosis symptoms come and go on a predicable schedule and Dr. M felt that my reported intervals of aggravated symptoms matched roughly with Babesiosis.

In 2011, when I first fell ill, I of course had a Lyme disease blood test through one of the large corporate blood labs.  I had the Western Blot test (which is considered by some to be superior to the ELISA test.)  The results were negative.

Since then, I've had many people advise me that I should be reevaluated for Lyme disease by an LLMD.  I nonetheless felt that Lyme was an unlikely explanation for my symptoms.  My prior doctor, Dr. W, told me he didn't think it was Lyme.  I never had any joint pain or arthritic symptoms, as are common with Lyme.  So I assigned Lyme a low priority on my mental list of possibilities to investigate.

After teaming with my new doctor, I was still reluctant to investigate Lyme.  Dr. M wanted me to take a test through the iGenix lab, which offers a version of the Western Blot Lyme test that is considered by many to be more accurate than the large national labs.  But there were two problems: (1) the Genix test is not covered by insurance and can cost about $900, and (2) the iGenix test is somewhat controversial, as some believe that it tends to over-diagnose people with Lyme disease.

I finally agreed to spend the money and take the iGenix test.  I truly believed there was a strong chance I would be the rare person to test unequivocally negative, even under the sensitive iGenix test.  This would, I hoped, put the Lyme issue behind me forever.

My doctor's office emailed me the results of the test on Wednesday night, ahead of my appointment.  The IgM antibodies for Lyme disease were positive.  The iGenix results show a diagnosis of Lyme under two standards:  iGenix's own standards, and under the standards promulgated by the national Centers for Disease Control (CDC).  If the iGenix standards are considered by some to be over-inclusive, the CDC standards are considered by many to be very under-inclusive.

My IgM antibodies showed positive for Lyme under both iGenix and CDC standards.  This captured my attention.

It should be 100% clear that I have Lyme diseases, right?  No.  Naturally, there's ambiguity.  My IgG antibodies were negative for Lyme disease under both standards.  IgM antibodies (positive) are indicative of a current, active infection, while IgG antibodies (negative) show past infection.  Dr. M's interpretation is that I still have an active Lyme infection and my body hasn't progressed to the stage of making IgG antibodies because the Lyme remains "active."

With respect to my doctor, I'm not certain that's how IgG antibodies work.  My understanding is that the immune system begins making IgG antibodies a few days to a few weeks after initial infection, even if the infection is still technically "active."  Unless I contracted Lyme on Monday (ha!), these results seem almost impossible.

The results of my Babesiosis test were equivocal.  Indeterminate.  Because of course they were!  It seems nothing is ever clear with chronic diseases.

I searched the Internet the night before my latest appointment with Dr. M to interpret these test results.  There were messages, blog posts, and articles by doctors and patients discussing my exact results.  While all of these sources indicated that I do have Lyme, many of them referenced (second-hand) that some doctors apparently interpreted IgM(+) and IgG(-) as a false positive result.  No such doctors could be found explaining their reasoning directly, rather there were vague, passing references to "some doctor's views."  I feel as if I'm only reading one side of the debate.

Still it is very hard to ignore the positive results under the strict CDC standards--right there in bold ink.  The words "CDC -- POSITIVE" practically demand my attention.  Plus, it seems as if most self-identifying Lyme patients who have been diagnosed through the iGenix test were not positive under the CDC standard.

I'll be honest: I am loathe to enter the Lyme "rabbit hole."  I've spent the last 4 and a half years researching and treating ME/CFS.  The Lyme community of patients always had a significant overlap with the ME/CFS community on message boards and blogs.  We were these two groups with seemingly about 95 to 100% overlap in symptoms and about 70% overlap in treatments.  Basically, we all speak the same language.  Yet in some ways the two communities seem worlds apart.  The Lyme community often appears closed and esoteric, and many Lyme patients disavow any connection with ME/CFS despite strong evidence that there's a similar chain of neuro-immune dysfunction in both diseases.  Nonetheless, both communities are bound by the connection that their diseases are understood by virtually nobody.  We've all been forced to adopt a sort of "us versus the world" defensiveness.

I've interacted with many Lyme patients on forums, many of whom are undergoing long-term antibiotic treatments.  Of those that I've personally interacted with, I can't think of any who have experienced any improvement on long-term antibiotics.  For that reason I'm reluctant to explore antibiotic treatment.  I recently read an article by the incomparable Cort Johnson that explained how some have been harmed by false Lyme diagnoses and unnecessary antibiotics.  I'm not shutting that door completely, but it would the last of last resorts for me -- pending more investigation.

In my mind there's about a 51% chance that Lyme is the cause of my problems.  But I suppose that I need to give Lyme treatments a chance.  How do I explain the positive CDC result?  Then again, how do I explain the prior negative Western Blot result, presumably under the same CDC standard?

Dr. M wants to treat it with a combination of Byron White formulas, "essential oils" treatment, and
Phosphatidylcholine.  I have to start researching these treatments.  The frustration is that it is difficult to find objective information on these treatments for Lyme.  Most of the information available is from Lyme patients who are taking these treatments, or "LLMD's" who prescribe them. Both groups are predisposed to believing their efficacy.

Rabbit hole, here I come...

Tuesday, December 8, 2015

Could autonomic neuropathy be part of the problem?

Today I want to share an email I received from a reader, reposted here with permission. This person was diagnosed with ME/CFS, and later apparently received a diagnosis of autonomic neuropathy (AN). I'm posting the email here in case others wish to look into neuropathy. I certainly plan to as soon as I am able.

Here is the relevant portion of the email:
"I read your blog and just wanted to give you a quick comment. Your SOB, numbness/tingling of your hands and feet could all be part of autonomic neuropathy, which also appears to be part of the symptoms for a subset of us with ME/CFS. 
I got the skin punch biopsy done to determine if indeed I was positive for small-fiber peripheral neuropathy. You have probably read about how more research is revealing that Fibro and ME/CFS patients are being diagnosed with SFPN. The test gets sent to Therapath labs. When I showed Dr. [C] the results, he commented "Well, congratulations, you now have a "real" diagnosis that Dr's will believe! 
I was able to get IVIG thru insurance for the neuropathy, however with all the weird things my body does....I had a strange inflammatory response (a long story for another time)! at a VERY low dose, so stopped that treatment. 
Anyway....if you research autonomic neuropathy, you will see one of the symptoms is Shortness of breath, along with the tingling/numbness in the hands and feet.
Just wanted to mention this, as I know how frustrating it is to have to go thru the "flow" chart with all these Dr's....and no real answers. This illness has so many strange symptoms that are tied into the central nervous system, systemic inflammatory processes, and possible nerve damage!... 
I hope you get back to your "regular" baseline soon. (by the way, don't know if you have ever tried guaifenesin (OTC)Mucinex D.....I take it to reduce post-nasal drip and "stuffy" sinuses plus the pseudoephedrine gives a little "energy" boost. Worth a try for SOB, as well as post-nasal drip, not only the decongestive properties, but also appears to have some anti-inflammatory properties."
I always appreciate when other patients reach out and share information like this, so I wanted to pass it along to others. I haven't had an opportunity to look into autonomic neuropathy yet, but the first thing I intend to learn is whether it is a disease in and of itself, or a "collection of symptoms" as some sources describe it. Based on my initial brief review of online information, it seems autonomic neuropathy may not be mutually exclusive with ME/CFS -- in other words, maybe ME/CFS can lead to AN.  Maybe the author of the email above can comment?

Thursday, November 12, 2015

My Plan to "Solve" My Respiratory Problems

At the end of my last post, I wrote that I'd finally decided my shortness of breath wasn't going to go away on it's own.  Clearly, I'm going to have to do something about it.  As a brief review, I've been experiencing very bad shortness of breath for approximately 4 months.  It comes and goes, but it's there more than 50% of the time.  It is always accompanied by post-nasal drip, and occasionally, when it's at its worst, I experience numbness and tingling in my nose, hands, and feet.  I have not been able to determine anything that consistently triggers it.  It often seems to arise or worsen when I'm in my car, but not always.  Many times I can drive my car and be perfectly fine.  Stimulants such as coffee or tea also seem to to trigger it, but again, not always.

My Lyme literate medical doctor (LLMD) thinks this will all be explained when I get a positive Babesia diagnosis--something she seems certain is inevitable.  I gave a blood sample yesterday, which is being sent to the IGenix lab (supposedly the gold standard in Lyme and Babesia testing). Frankly, I don't think I'm dealing with a Lyme or Babesia.  It would be difficult to explain all of the reasons why I feel this way, so I'll save it for another post.  Nonetheless, I want to fully explore those possibilities and hopefully rule them out once and for all.  I receive the results of the IGenix tests in early December. 

In the meantime, I visited my primary care physician (Dr. L). and told her about the shortness of breath and related problems.  She first tried a nebulizer containing essentially the same medicine as an asthma rescue inhaler.  No improvement.  Next, she sent me for an X-ray.  I knew this would be pointless, but sometimes you have to let your doctor work through their mental "flow chart" until you can get to more fruitful diagnostic testing.  

Next, Dr. L is sending me to a pulmonologist.  I think this will again be pointless.  I saw a pulmonologist during my acute phase about 4 years ago.  I was having shortness of breath at that time too, although not as bad as now.  He gave me a spirograph test and a treadmill exercise test.  I passed both tests just fine.  If I pass again this time, I'd really like to see an allergist as my next appointment. Given that the shortness of breath always comes with post-nasal drip, it doesn't seem likely that I have a lung problem alone. It seems more likely that something is causing inflammation throughout my entire respiratory system, from the nasal passages to the lungs. This would be more in an allergist's wheelhouse--or so I figure.    

Not content to leave everything up to my doctors alone, I tried a few experiments to see if I could treat the problem on my own.  I have a few prescription steroids and oral anti-inflammatories in my medicine cabinet.  So here's a list of things that had absolutely NO noticeable affect:

1.  Oral Prednisone, 5 mg 
2.  Vicodin 5mg/300mg
3.  Azelastine Rx nasal spray
4.  Flonase OTC nasal spray
5.  Breathe Easy Herbal Tea (yes, I tried this. I was desperate!)
6.  Fresh air (possibly more experimentation is needed here - can't completely rule this out.)

At this point, I'm starting to get worried that I'm running out of possibilities.  Shortness of breath is one symptom I really don't want to "just live with."  This is crazy!  With all of the diagnostic technology available to doctors today, how can they not figure this out?  

Tuesday, October 27, 2015

Cutting Some of My Supplements Was a Mistake

In July, I wrote that I had cut back on the number of supplements I was taking.  It was part of a plan I'd been working on with my new doctor (Dr. M) to eliminate any supplements that I didn't feel certain were significantly helping.  This would save money and, possibly, liver function.  I had already started cutting some of the supplements several months before that July post.

Beginning in about June and continuing all the way through the end of September, I started experiencing swollen and tender lymph nodes on an almost daily basis.  I wrote about this in late August in a post called A New Phase of My Illness.  I felt generally more weak and tired when this lymph node swelling would occur, and the monthly averages of my daily health ratings were among the lowest from the prior 24 months.  It was clear that I had taken a step back, health wise.

I don't know why it took me so long to make the connection, but in late September, I searched through my daily health chart for changes near the time of the onset of the lymph node swelling and related symptoms.  It was a week or two after I had cut a supplement called ImmunoStim. ImmunoStim is a private label concoction offered by one of my old doctors (Dr. W) and his, frankly, rather corporate medical practice.  It's a sort of all-in-one combination of many of the usual herbal immune stimulants and modulators:  Beta glucans, olive leaf extract, maitake mushroom, and others.

So I re-ordered ImmunoStim and within a week of going back on it, the lymph node swelling went away.  Rarely has anything with ME/CFS been so clear and straightforward.  I had completely underestimated how much my compromised immune system needs that particular supplement.  So I'm back on ImmunoStim indefinitely.


Unfortunately, the respiratory issues that I wrote about in the A New Phase of My Illness post are still a problem and actually, I think, might be getting worse.  I'm suddenly feeling very motivated again to start visiting doctors and seeking answers to this problem.  It's obviously not going away on its own like some out-of-the-blue symptoms do.  I'm working with Dr. M (the LLMD) but I'm going to "dual track" this search and pay a visit to my good ole Primary Care Physician.  She's a great doctor, although she's been of very little help to me since getting ME/CFS.  But, on this respiratory issue, I have a hunch she might be able to point me in the right direction.  At the very least, she's good at referring to the right specialist.  I have an appointment with her on Thursday.  

Tuesday, October 6, 2015

Negative for MARCONS, positive for Staph

One of my doctors (Dr. M) and I have recently been trying to figure out why my two strongest symptoms over the last six months have been nasal congestion and shortness of breath.  These two symptoms always flare up together.  It's as if inflammation hits both areas (sinuses and lungs) at the same time, and usually lasts for 24-48 hours before abating.  Even when it is abated, my lungs always seem to have a slight feeling of air hunger these days.

Dr. M gave me a nasal swab test.  (This involved sticking a Q-tip up my nose "2 to 4 inches"!)  She was looking to diagnose exactly what kind of bacteria had taken up residence in my nasal passages. In particular, she was looking for MARCoNS (Multiple Antibiotic Resistant Coagulase Negative Staphylococci).

A few minutes ago I received a call from my doctor's office stating that I am negative for MARCoNS but "positive for other Staph infection consistent with mold exposure."  It was the office manager calling to give me this information, so it's not clear if the conclusion that the results are "consistent with mold exposure" actually came from my doctor.  For reasons that are too complicated to go into in this post, I have always been skeptical that biotoxins play a role in my illness.

My next appointment will be interesting because I'm very curious to see where Dr. M wants to go with my treatment plan.  For the most part, the first year I've been with her has been focused on various diagnostic tests.  We haven't even gotten to a treatment plan yet!

Saturday, September 26, 2015

My Latest Doctor's Appointment

My latest doctor's appointment with Dr. M was a bit of a disappointment.  As I wrote previously, Dr. M (a Lyme literate medical doctor, or LLMD) wants me to take Lyme provocation test.  This involves taking antibiotics or some other type of Lyme treatment to "provoke" any potential Lyme spirochetes, making it easier to detect in an IGenex blood test.  I don't want to take antibiotics, so the provoking agent she gave me was an herbal product called A-L Complex.

I reported back to Dr. M that I simply wasn't able to complete the provocation test.  Every time I tried to "ramp up" the dose of A-L Complex, I felt simply horrible.  I just couldn't do.

Dr. M told me there are other options, so she switched me to a different provoking agent called MC-BB-1.  I can already tell this new treatment is much more mild.  I am handling it fine, so I plan to have blood draw for the IGenex test in late October.

My understanding that IGenex test and the interpretation of the results are a bit controversial, but I first want to get the results and then study exactly what they might or might not mean.  Dr. M highly suspects that I have a Lyme and a Lyme co-infection called Babesia.  She bases this on the fact that on of my biggest symptoms is extreme shortness of breath, which can be indicative of Babesia (as well as about 1,000 other ailments.)

When I finally get the results, I plan to keep an open mind, but if it's positive, approach it with a healthy dose of skepticism.  I suspect that Dr. M sees the world through green goggles--that is, she sees Lyme in just about anything.

At my appointment, the biggest question on my mind was what can I do to treat my two main symptoms lately: shortness of breath and sniffles -- they always come together now.  The answer was a little disappointing.  There's not much I can do to treat the symptoms until we figure out the underlying cause.  This was a huge disappointment.  When it gets bad, all I want is a little relief.  Sometimes in this day and age it's hard to believe there's not more we can do to treat certain symptoms.

Monday, August 24, 2015

A New Phase of My Illness

Looking back at my daily healthy chart (averaged by month), I can see that I clearly hit a peak in March of this year.  That was my highest rated month since getting ME/CFS in June, 2011.  From June 2011 to March, 2015, I was steadily improving.  Naturally, there were setbacks, but the overall trend was improvement.  The improvement trend seems to have reversed itself after March.  It's only been about five months since then (and July was actually a pretty good month), so it may be too early to call this a reversal.  But I've also noticed that my symptoms have changed during that time.

The good news is that my symptoms have become more consistent and predictable.  The bad news is that they seem to be present more often than, for example, this time last year.  Since March, my main symptoms have been sinus issues, shortness of breath, and swollen lymph nodes in the neck.

For years, I've seen and read of other ME/CFS patients on message boards who dealt with sinus issues, and I thought, "how strange that I don't have any sinus issues."  Well, now I do.  Every day. Each day, for at a minimum of 2 to 3 hours, and sometimes all day, I get the sniffles.  Never a fully clogged nose - just the sniffles.  It's a consistent post-nasal drip.  It often dissipates as quickly as it arrives, for no apparent reason.  Netti pot and other nasal sprays have been ineffective.

The sniffles always come with shortness of breath (SOB).  The two symptoms are somehow intertwined.  With the shortness of breath, even though I am breathing normally, at a normal pace, it feels as if I'm not getting enough air.  If I stand in one place for more than a couple of minutes, the shortness of breath becomes worse.  It feels as if my circulatory system is struggling to get oxygen to all parts of my body.  Lying down flat, or simply moving around and improving circulation seems to help the condition, but not fully alleviate it.  This may be why, every time I have a blood test, my red blood cell count is sky high.  I have the red blood cell count of someone who lives at high altitude.  For a while, I dismiss this as a side effect of the Testosterone injections I was taking, but the condition continued even after I stopped taking Testosterone.  

SOB is not a new symptom for me at all.  It was one of my original "big three" symptoms.  But what is new is that (a) it now always comes with the sniffles, and (b) I get it every day.  For long periods of time, sometimes months at a time, SOB would be gone from my symptoms list.  Now it is an every day experience.

And the final symptoms is swollen lymph nodes.  This is another one I've had periodically in the past, but very rarely, and never for more than a couple weeks at a time.  Now I've had it every single day (to at least some degree) for the past two months.  So it feels like I've entered a new stage of the disease.  My doctor can clearly feel the swelling, and sometimes it's so prominent that it becomes uncomfortable to turn my neck.

But the good news is that the consistency of the first two symptoms (sinus and SOB) give me something to focus on.  For so long, the symptoms would change so frequently--from day to day, week to week, and month to month--that there was no point in me searching for answers based on symptoms.  I instead had to take a "macro view," simply searching for treatments to ME/CFS in general.  Now I wonder if I can be categorized in a subset of ME/CFS--if I can use the new consistency in my symptoms to focus on what, specifically, might be at the root of my problems. I still hold out hope sometimes that ME/CFS might be a misdiagnosis, and that the correct diagnosis might be something treatable.

Thursday, July 23, 2015

I've Cut My Supplements Way Down

In February, I wrote that I wanted to cut my supplements way down.  It was partly because my doctor suggested it and partly because I'd wanted to do it for a long time anyway.  Too many supplements is expensive and risks overtaxing the liver.  Not to mention they are a hassle.  So I listed my supplements in order from those that I was most sure were helping, to those that I was least sure were helping.  Then I started eliminating supplements from the bottom of the list.

In April I took a big step back in my baseline health.  I didn't think it was because of the reduced supplements, but just to be safe, I went back on all of them.  Things returned to normal a couple months later, and so I started eliminating supplements again.

Of the 18 supplements on the list, I'm now only taking half of them.  (It's funny, I thought I'd eliminated more than that before I counted just now).  But for many of the suplements that I'm still taking, I've either reduced the doses, or I take the weekends off from them.  The only supplements/Rx's that I take on weekends now are T3 Thyroid and D-Ribose.  Everything else is eliminated on the weekend.

So far, I don't think I feel a difference.  As long as that continues, I will continue to cut down on supplements until either I eliminate all but a few obvious ones (like multivitamin and fish oil), or until I experience a setback.  

For those who might wonder, the supps and Rx's I'm still taking are: T3, Vit. D3, Probiotics, Equilibrant, DHA/EPA, D-Ribose, and only occasionally potassium and magnesium.

Others might wonder: given that I haven't missed the supplements I eliminated, does that mean that they were a waste of time and money?  That's hard to say.  The list I prepared in February was only a fraction of the supplements I've experimented with since getting ME/CFS.  Over the last four years, I've probably tried 4 times that many (so about 70 - which is not unusual for a PWME).  Given the large number of supps I've tried, it would be absurd to say that they all helped, and I specifically recall some that made me worse.  But I think for the most part, I needed the supplements that I took when I took them.  I have certainly improved over the last 4 years, although I'm nowhere near where I'd hoped to be by now in terms of improvements.  I think most of the supplements that I tried and stuck with for any length of time were the right supplements for me at that time.  I don't regret anything.

Friday, July 10, 2015

4 Year Anniversary

My 4 year anniversary came and went last month without me realizing it. I originally came down with the mega-flu that started "all of this" during the first week of June, 2011. In the 3 subsequnt Junes, I have been very aware of my anniversary on the day it came. The fact that I forgot about it this year is probably a sign that I've learned to live with my illness a little more - which can be both good and bad. I definitely think about it less, but I don't want acceptance to prevent me from continuing to aggressively seek answers. 

Tuesday, June 30, 2015

Can't Seem to Complete Lyme Provocation Test

In a video post from April, I explained that my new doctor believes I have chronic Lyme disease, but the results of a Stonybrook Lyme test were inconclusive.  As a result, she (Dr. M) wanted me to conduct a Lyme "provocation" test, in which I take an herbal supplement (called A-L Complex), which is supposed to stimulate the immune system to kill the Lyme-causing borrelia bacteria. Apparently, after the immune system kills some of these borrelia, the Lyme blood tests are more likely to detect the presence of the borrelia (because live borrelia are adept at hiding.)

My instructions were to begin taking the A-L Complex starting with 3 drops per day, then, three days later, increase to 6.  Then, three days later, up to 9, and so on up to 20 per day.  After I reach the 20-per day dosage, I was supposed to repeat the Lyme test.

The problem is that even 3 drops per day made me feel awful--brain fog, headache, muscle pains.  So, on my own, I reduced the dose to a mere one drop per day, and still felt terrible.  (It's interesting that the directions on the bottle of A-L Complex instruct the user to take only 2 drops per week.  We're going way off-label here.)

Over the last month or two, I've continued to experiment with fractional doses, hoping that I could find a way to slowly titrate to 20 drops per day.  As it stands now, I don't see how I will ever be able to make it to 20.  I can't even handle 1.  Granted, I'm being a little bit of a baby about this.  I could do it if I really needed, but it would be near impossible to keep up with my home and work responsibilities at the same time.  So I'm trying to figure out my next step.  I either have to set aside a month in which I reduce my responsibilities and devote myself to titrating and testing, or return to my doctor and admit failure.  I could ask my doctor if there's a "Plan B"--perhaps using antibiotics instead of A-L Complex.  (Antibiotics are, I believe, the standard for Lyme provocation tests, but I originally declined.)   Or perhaps my reaction to A-L Complex is evidence enough that I am dealing with Lyme?

Monday, June 15, 2015

My new headache symptoms - another clue

I've figured out what this new headache symptom is about.  Since my last blog post, in which I wrote about recent headaches, these new headaches have come and gone every five or six days.  They usually last about 2 days.  

My first clue to their origin was that these headaches are accompanied by a tremendous tightening in my shoulders and neck.  This is not the typical tension seen in people who spend large blocks of time in desk chairs.  I've experienced that lesser tension all of my adult life -- it is a minor annoyance.  This is something entirely different.  The tension in my neck and shoulder muscles is easily palpable to myself and others.  At onset, over the course of an hour, knots the size of grapes form in my shoulder muscles.

A legal assistant in my office is a long-time sufferer of tension headaches.  She states that I'm suffering classic tension headache symptoms.  Apparently tension headaches start in the shoulders and neck.  These muscles, in turn, pull on the muscles connected to the top of the skull, producing a headache.  When she explained this, the proverbial light bulb went on.  A little Googling confirmed her assessment.

Why, then, after four years of ME/CFS, has this new symptom emerged?  What I believe is happening is the inflammation that is a hallmark of this disease has taken up occasional residence in a new part of my body. At the risk of oversimplifying this complex disease, it has always been a matter of inflammation (possibly from cytokine "storms") forming in different parts of my body.  When it would hit my groin, I'd feel groin pain.  Kidneys; kidney pain.  Lungs; shortness of breath.  Brain; brain fog.  Etc.

I believe that now, for unknown reasons, the inflammation has started to attack my shoulders and neck.  This results in tension headaches.  I'm actually OK with this as long as the net inflammation in my body isn't increasing.  If the inflammation is hitting my shoulders because it has "left" another part of my body, I can live with that.  I haven't had true groin pain since about February, so perhaps the cytokine storms have moved on?  Joke if you will about the troglodytic nature of men, but I'd rather have the headaches than the groin paid.

[When this new symptom first appeared in the week before my vacation, it was accompanied by brain fog and swollen lymph nodes.  Since then, the brain fog has not been a part of it, and the glandular swelling, only a little.  I think the contemporaneity of the brain fog during that week was coincidence.]

Thursday, May 28, 2015

What I learned from a vacation

In that wake of a recent vacation I took to Croatia, I have to rethink much of what I thought I knew about my illness.  Since the beginning of April, I have been in a crash that was severe enough that I wondered if it should actually be called a relapse.

The day of the vacation arrived and I was feeling about as ill as I've felt at any point the last two years or so.  I was really beginning to regret that I had ever thought I could manage this vacation.  I was lying on a bench at Los Angeles airport with this weird brain-foggy headache that had become my worst symptom in the prior two weeks. It comes with painful knots in my shoulders and sometimes swollen glands in my neck.  It's a new type of headache that I hadn't previously experienced.  I wondered how I would manage an 11 hour flight, a 5 hour layover in Germany, and another two hour flight.  Then a cab ride.  Then a walk up three flights of stairs to a rented apartment in Dubrovnik.

I figured if I could just manage to get to that apartment, then I could repose for an entire week.  I rationalized that, even if I was never able to leave the apartment, at least I would have a view of the Adriatic and fresh salty breezes.  At least I'd have a new stamp on my passport.

My wife had some migraine medicine and she suggested I try it.  I had nothing to lose so I popped the pill.  At around that time, I noticed that the airport had a day-spa right there in the terminal.  There was plenty of time before the flight was supposed to board, so I decided to buy a half-hour neck and shoulder massage by a professional masseuse.

I still don't know if it was the massage or the pill, but by the end of that massage session, I was feeling 85 to 90% better.  I couldn't believe it.  My symptoms continued to improve on the flight to Frankfurt.  By the time I landed in Frankfurt, I actually felt well enough to leave the airport during the layover and get coffee and lunch in the city's center.

Once in Croatia, I was like a person just out of a coma.  Sure, on a few days, I felt the brain-fog/headache, but it was barely noticeable--a background inconvenience.  As I do sometimes on special occasions, I forgot about my diet for the week and ate and drank whatever I wanted. Croissants.  French fries. Baguettes.  Cappuccinos. Gelato.  Beer!  Notwithstanding the time difference and jet lag, I felt more or less like a normal person for that week.  Perhaps strangest of all, the white film that's usually on the back half of my tongue (indicative of candida) was mostly gone all week, despite my broken diet.

So I figured this vacation happened to correspond with a turning point in my crash.  Maybe it was a coincidence, I thought.

I flew back on Sunday, still feeling good.  Had Monday off of work.  Still felt great.  Tuesday morning I wake for work and that weird headache is back just a little.  It's barely noticeable when I first wake.  By the time I get in the car to drive to work, it's raging again.  I think, "what the hell is going on here?"

The symptoms have persisted on and off (mostly on) since Monday.

Most ME/CFS patients will read this and probably think: "There you go. You've proven that your ME/CFS has an environmental trigger.  You're obviously reacting to something in your home, car, or work."

I suppose that may be true, but it doesn't explain why so many other past experiments with changing my environment haven't made any difference, nor why I felt so well (relatively) in my home/work environments over the past year, up until April.

Another possibility is that the symptoms are caused by a supplement.  I did leave a few of my supplements behind to save space in packing.  I'll experiment more with this, but I'm doubtful.

Still another possibility (and believe me I hate to acknowledge that this is even possible) is that stress associated with work is somehow triggering my symptoms.  This still wouldn't explain why my immune system is so screwed up in blood tests, but I suppose it's possible stress could exacerbate immune dysfunction.   My reaction to this possibility is: it doesn't make sense because I'm fairly laid back and don't think of myself as a stressed-out person.  But I suppose stress could be affecting me on a level I'm not aware of.

Bottom line: this vacation has given me a lot to  think about and evaluate with my doctor.  I never expected to suddenly feel great on the vacation and I never expected to suddenly regress when I returned.  This certainly seems to be a strong clue, but I don't yet know what it means....

Excellent Article on Anti-Inflammatory Diet

"If the balance shifts by consuming excessive omega-6, the cell membrane produces chemicals called cytokines that directly cause inflammation."
Every once in a while, I find that I need to remind myself of why I've adopted an anti-inflammatory diet.  Most of the time, I don't find it difficult to stick to my diet, but sometimes I'll allow myself a little taste of a sugary dessert or bread.  When I do, sometimes it's very difficult stay on the wagon--to not go crazy and bury my face in a pile of confections.  Articles like this are perfect reminders of why I need to stay on that wagon.

Friday, May 15, 2015

Why it's so hard to tell what's causing an ME/CFS crash

I have a very hard time determining what's causing a crash.  I often go back and forth between two possibilities.  (1) One is that I caught a simple cold virus or flu virus and my weakened immune system is having a difficult time clearing it.  (2) The other possibility is that the crash is more of a normal ME/CFS cycle, where existing chronic viral infections (opportunistic infections that take advantage of a compromised immune system, like EBV, HHV6, CMV, enteroviruses, etc.) suddenly "rally." Sometimes the "rally" can be brought on by stress or overexertion or anything that can further weaken the immune system.

I'm not excluding other possible causes of crashes, but those two seem most likely in my case.

A normal person who doesn't have ME/CFS might think, "we all know what a cold or flu virus feels like.  Can't you tell if you feel like you have a cold or a flu?"  The answer is "no" because one's immune system changes when he/she contracts ME/CFS.  It reacts differently to pathogens -- even ordinary cold and flu viruses. This change is often described as an imbalance between two sides of the immune system: Th1 and Th2.  The famous ME/CFS doctor Cheney describes the problem (as transcribed by one of Dr. Cheney's patients, with permission):

Researchers have demonstrated that most CFIDS patients end up stuck in Th2 mode. This has several consequences. When the Th2 system activates, it blocks the Th1 system. This suppresses the Th1 weapons, particularly NK function. Accordingly, there is also an increase in the Th2 weapons - the white cells and antibodies. Most notable is increased antibody production. Dr. Cheney said that if you measure antibodies to anything a CFIDS patient has ever been exposed to, they will very likely be elevated.... 
Cheney notes that other problems ensue. Patients get into trouble on both sides: they overreact to things on the right side and under-react to those on the left. When they are Th2 activated, they no longer have the defense mechanisms to keep dormant all the things they caught in the past. They cannot suppress or control them anymore, and the EBV, chlamydia pneumonia, CMV, etc. reactivate. The yeast also begins to appear. 
The only defense against being eaten alive at this point is RNase L....RNase-L cannot kill any of these things. It only stops them from reproducing. According to Cheney, "It's a line in the sand saying 'No more replication', and it waits for Th1 to come and kill them. But Th1 never comes. RNase L sits there and grinds away, possibly going up and down as the pathogens activate and reactivate. But they never get wiped out. RNase L holds the line, waiting for the cavalry that never arrives.

The Th1 side of the immune system is the side of the immune system responsible for, among other things, attacking and clearing pathogens that are "intra-cellular"--that live and replicate inside human cells. The Th1 immune cells know how to find and destroy viruses that hide inside cells.  Even ordinary cold and flu viruses fall into the this category of intra-cellular that replicate inside cells, meaning a person with a Th2 dominant immune system would have a harder time clearing these viruses.

When a Th2 dominant PWME contracts a cold or flu virus, the virus still triggers the immune system. But it triggers the immune system in a new and different way.  Other aspects of the immune system try to compensate for the deficient Th1 response.  Th2 is turned on (further) when Th1 should be turned on.  So when a Th2 dominant ME/CFS patient contracts a new virus, we don't feel the same as when a normal person encounters a new virus.  Our immune systems becomes triggered, but in all the wrong ways.  These "wrong ways" make us feel horrible - but not "horrible" in the same way a normal person feels when they get a cold or flu.  It's much different.  And it lasts longer.  It comes with neuorologial symptoms like brain fog, muscle twitches, numbness, and a long list of other oddball symptoms.

Because of this, I often can't distinguish between the two types of crashes I described in my first paragraph.  They essentially feel the same -- with the possible exception that a cold or flu- triggered crash might bring more typical symptoms like sore throat, and runny nose, in addition to the "oddball" symptoms.  On the other hand, I can't rule out that a "rally" type crash might also bring on those symptoms.

Sometimes I wonder if all of the crashes I've ever had fall into only one of the two categories.  I have this pet theory that I wonder about sometimes.  Maybe all of the ME/CFS crashes that I've ever had are due to me encountering run-of-the-mill every-day viruses that my weak immune system struggles to neutralize. We all (healthy and sick people) people encounter viruses nearly every day, but a healthy person's immune systems manages to clear most of these viruses without the person every feeling symptomatic. It's only the occasional, more robust virus that makes the person feel symptomatic.  It's possible that having ME/CFS--at least my version of it--is simply a state of having my immune system constantly triggered in a defective way.

(For many of my ME/CFS friends who react to mold or other environmental triggers, it's essentially the same thing except the catalyst that triggers their immune systems is different.  Rather than being viral, it's environmental.)

The only way I could test this theory would be spend time in a hermetically sealed bubble like the famous Seinfeld "bubble boy."  My suspicion is that if I ever spent time in an environment free of pathogen exposure, I'd feel great.  Since that's obviously not realistic, I'll just have to wonder...

Friday, May 1, 2015

April - my worse month in two years

I just calculated my daily health chart average for the month of April and it was my lowest daily average for any month since May, 2013.  The difference between April's average and all other averages of the past 12 months was enormous.

I'm still trying to determine the cause of this crash: is it a bug or could the stress of a recent arbitration have weakened by immune system?  Or a combination of both?  

I continue to have symptoms of a regular cold, like a cough and nasal congestion, but it's difficult to tell if that's the root of the crash or more symptoms of it.  Since coming down with ME/CFS, my immune system reacts differently to colds.  In my pre-ME days, cold symptoms were limited to...the usual cold symptoms.  They tended to be localized, i.e. in my sinuses or lungs.  But now, a cold seems to trigger my dysfunctional immune system in funny ways.  Inflammation runs rampant.  I get brain fog, achy kidneys, very swollen lymph nodes, sleep disturbances, and many other problems. That's why, after your system goes out of whack with ME/CFS, it's very difficult to determine what's going on when you're crashing.

I'm holding out hope that this is just a particularly bad cold, and not a more significant set back.

Sunday, April 12, 2015

New doctor thinks it's Lyme... I'm not so sure

Part 1

                                                                             Part 2

Saturday, April 11, 2015

Update On Last Post

I'm still trying to figure out if I'm dealing with a run of the mill virus or some kind of more serious setback. On Thursday a nasty sore throat set in. I was thrilled. This made it much more likely that I'm dealing with a  run-of-the-mill pathogen  - one I might defeat in a week or two. 

I went to a walk-in clinic on Friday and the doctor swabbed my throat. Although the swab came back negative for strep, she said it still looked like strep from her visual observation and based on my other symptoms.  So she prescribed me penicillin.  (*sigh*) Antibiotics again. But what are my alternatives? I can't just let strep go unchecked. 

She wanted to prescribe me Prednisone for two days as well, but after I explained some of my blood test results that indicate compromised immunity (low NKC function, low CD57, low IGG subclass 3) she said I probably shouldn't take the Prednisone. I filled the prescription anyway...just in case I need it some day. 

Wednesday, April 8, 2015

Possible relapse - very frustrating

I keep a daily rating of my overall health, then I tabulate an average at the end of each month to track my progress.  March, 2015, was my best health month since I first became ill in the Summer of 2011. Even before I tabulated the average, I could tell March was going to be a blockbuster. I only had one or two days in the month when I didn't feel like I could accomplish about 90% of the things I needed to do (work, errands, child care) and maybe 80% of the things I wanted to do. Short of any cardiovascular exercise (which still induces a crash), I was, if not exactly "living large," living upper-medium.  

As March continued, I started wondering if I should consider myself "in remission."  I wasn't close to my pre-ME/CFS self, but I was wondering if I should nonetheless consider myself more-or-less in the category of "regular people."  I still regularly experienced symptoms like "air-hunger," swollen lymph nodes, and random inflammation, usually in the area of my kidneys and pelvic floor, and many others.  But over time, these symptoms had reduced in severity to the point where I felt I could live with them without too great of a reduction in quality of life. March was the pinnacle of this.

So naturally I went nuts during the month of March, despite my better judgement.  I started drinking coffee on a daily basis and running around doing errand after errand like I'd never heard of ME/CFS.  "What's this Myalgic Whatchamacallit you speak of?"  I let myself work later and later hours.  I even worked a weekend, despite reservations in the back of my mind.  It's easy to say now, "I should have known better not to push it so hard." But then again, as I improve, how will I know what my new limits are unless I test them?  Plus, who has the discipline not to fall back into old habits, i.e., being a regular person?  If you do, you're stronger-willed than me.  

On Friday, April 2, body-wide inflammation swept over me and I knew it was something significant.  It's only been 5 and a half days since then, so maybe it's too early to call it a relapse.  Sunday was a so-so day.  And even in my current state, I'm more functional than many patients.  It's nonetheless disappointing.  I keep holding out hope that this is just a "bug" (sick on sick), but it doesn't feel like it.  Unlike with a typical viral infection, the symptoms aren't localized to any particular area of my body.  They are everywhere: brain fog, swollen nodes, shortness of breath, kidneys inflamed, gums inflamed, cold hands and feet, weakness, pain in pelvic floor muscles.

Another possible explanation for this downturn is that I recently started experimenting with eliminating certain supplements and prescriptions from my daily routine.  So far I've cut out OraKidney, potassium, PS Complex, Valacyclovir, and B-complex With Metafolin.  I also cut Vitamin D-3 down from 10,000 IU per day to 5,000.  I cut back on Testosterone injections too because I thought it might be contributing to pain in my pelvic floor muscles.  Just to be safe, I'm going to start going back on those supplements until I get this figured out.  

It will be interesting to see how this one plays out...

In the meantime, I got a bunch of test results back from my new doctor.  I owe this blog an update on those results too...coming soon.  Short version: CD57 (a type of Natural Killer Cells) is pathetically low.

Thursday, March 12, 2015


Out of the blue I received the email below from my brother today.  It assesses my progress with ME/CFS.  Although it was meant to be funny (and it is), it is actually surprisingly accurate.

I came up with another barometer in assessing your progress with CFS. It assumes that there is negative correlation between the number of blogs you post and how you are generally feeling/progressing. For example, the higher # of blogs you post, the worse you feel over a given period of time. This assumption follows the belief that the more you are crashing, the more you are thinking about CFS and the more you are blogging about CFS. The opposite relationship should hold true as well. The less you are crashing, the less you are thinking about CFS and the less you are blogging about CFS.  
The obvious problem with this metric is that you have likely gotten tired of blogging over time regardless of how you are feeling. Therefore, the blogs naturally have become more infrequent with the passage of time. This measure ignores that issue and should only be referred to for general trends. Furthermore, it is not a linear relationship, i.e., ½ the amount of blogs does not mean that you are feeling 2X as good as baseline. 
Below are the # of blogs per year (please note I have not broken down monthly yet and 2011 and 2015 I have excluded because they are stub years): 
2012    139 blogs 
2013    75 blogs 
2014    43 blogs  
Two other contributing factors to above. 1) It was a slow day at work 2) I was inspired by reading some of your blog today. If one thing is clear, you want hard numbers and facts to back up CFS diagnosis, treatments and progress.  
Without knowing anything about CFS, this is the best I could come up with. The good news is my analysis reveals that you are indeed feeling better.

I have to say, his analysis is pretty accurate.  I do blog more when I'm feeling worse--up to a point. There's a point where I feel too sick to even blog, but I'm one of the lucky patients who rarely crosses that threshold.  And yes, I'm giving this the "Tracking" tag -- it's as good a measure as any other.

It also reminds me how lucky I am to have family members who generally "get it" and don't think ME/CFS is a joke. So many patients don't have that.

I'm anxiously awaiting the promised monthly breakdowns!

Wednesday, March 4, 2015

Wait, now I can drink coffee?

This disease is so odd, the way it evolves over time.  For the first three years of ME/CFS, I would crash if I drank coffee.  Even decaf.  And believe you me, I tried many many times, such is my love of coffee.  I kept thinking, "oh, the last time was a fluke.  I just happened to crash right after drinking coffee  It will be different this time."  It took about 8 to 10 experiments before I finally accepted that I couldn't drink coffee.

Recently, I've tried it again, starting with decaf, and all of a sudden I can drink it again without crashing.  I don't know if that means I should, but I just can't emphasize enough how nice it is to know that I can if I want... at least occasionally.

[1/27/15 update: I am no longer able to drink coffee.  That only lasted about 5 months.]

On the bad side of things, that aching in my kidneys that had gone away for so long is starting to come back again.

That's how it seems to go with ME/CFS for me ever since I got it.  One issue will resolve itself, but another will arise.  Often it feels like a zero sum game.

Sunday, February 15, 2015

Re-Ranking My Supplements

As I wrote about in my last post, I've been planning to rank all of my supplements and prescriptions in order of most effective to least effective.  After that, I plan to start cutting from the bottom until I notice a decline in my health.  The idea is to get down to only the supplements and prescriptions I absolutely need in order to maintain my current baseline health.  My new doctor supported his idea.

I had ranked by supplements once before, but it has been years since I've done so, and since then, many of my supplements have changed.  I've also had much more time to observe which supplements are clearly helpful and which supplements are more questionable.

Unlike last time, I'm not going to rate any "treatments" other than supplements and prescriptions -- in other words, nothing that fits into the category of lifestyle adjustments, like changes to diet or sleep habits.

I'm only including supplements that I take every day.  I am not including "as needed" supplements.  For instance, whenever I'm coming down with a cold, flu, or other mystery bug, I take my cold-buster regimen.  I'm not worried about cutting back on those supplements at this time.

The ranking is included on the attached Google Docs spreadsheet.  The supplements and prescriptions at the top of the list are the most effective and would be the last to be eliminated.

Saturday, February 7, 2015

I changed doctors. My new path....

For the past several years, I have regularly seen two doctors for ME/CFS.  One of them is a well-respected ME/CFS specialist.  (I call him Dr. C on this blog).  For the most part, he's everything you'd want in an ME/CFS doctor, except he has a pretty narrow focus and slim range of treatment options.  In other words, he's good at the few things he does.

The other doctor (Dr. W) is more of a generalist, but with a specific focus on all these complex maladies that baffle the average family doctor.  He speaks the language of ME/CFS, lyme, fibromyalgia and autoimmune diseases (although he's a little too focused on pushing his firm's private label supplements.)  I used Dr. W for exploring treatment options that Dr. C is simply unfamiliar with.

Over the past three years, under the dual care of Dr. C and Dr. W, I have slowly shown improvements, bit by bit.  I'm still far from my pre-ME/CFS self, but I am much more functional than before.  Of course, I realize that my situation could change at any time.  The "R" word is always a concern, so I try to enjoy every day of this for as long as it lasts.

Why I'm Switching

I've recently come to believe that I've gone as far as I can go with Dr. W.  He hasn't raised any new ideas in the past few appointments, and my improvements seem to have hit a plateau.  And I'm greedy, so I want more.

Plus, Dr. W's medical firm owns its own compounding pharmacy and private label supplements, and I can no longer ignore the inherent conflict of interest.  I don't appreciate having to wonder in the back of my mind: does he really have my best interests in mind when he recommends a supplement?  With every recommendation from Dr. W, I found myself double and triple checking his advice from other sources.  I'm tired of that.  And so I'm replacing him with Dr. M.

Like Dr. W, Dr. M is not an ME/CFS specialist per se, but the next best thing: a specialist in diseases like ME/CFS, lyme, fibro and autoimmune.  On her website, she refers to herself as an "integrative medicine" doctor (treating "body, mind and spirit"), which at first sounded a little too hippy-dippy for me.   I'm, quite frankly, not too interested in discussions of my "mind" or "spirit"... just western medicine, thank you.  But I scheduled a 10 minute interview with Dr. M before choosing her as my new doctor and she convinced me that she's intelligent and she knows her stuff.

The Appointment

Before the appointment, I had to fill out a thirty five page questionnaire and submit a 3-day food log of everything I ate and drank.  The nurse also asked me to bring in copies of my lab test results.  I had to laugh as I handed them a 130 page stack of labs.  "Have at it." 

To my surprise, by the time of me appointment, Dr. M had practically memorized my lab results.  She said she had "studied them the night before," which showed me that (a) she loves her job enough to work after-hours, and (2) she doesn't just skim a patient's history like most doctors.  Throughout the appointment, she struck me as a medical "geek," which is exactly what I want in my doctor.  

Dr. M had asked me to bring all of my supplements and prescriptions to the appointment (in their original bottles).  We went through them one-by-one and she gave me her opinion as to whether I should continue or discontinue each.  To my surprise, she actually supported my continued use at least half of them.

I told Dr. M that I have been planning to make a list of all my supplements and prescriptions in order of perceived efficacy.  Then I had planned to start cutting from the bottom of the list, eliminating one every two weeks until I started noticing a decline in my health.  She supported and encouraged this idea, and encouraged me to do it as a homework assignment before my next appointment.  So I'm going to incorporate her input into my list and then post my list on this blog later this month.  

The New Plan

For years, I've been meaning to "close the loop" on investigating whether lyme disease might be at the root of my health problems.  In my mind, the point would be to, mostly like, rule it out, so that I don't have to wonder anymore.  In my mind, I've never considered it likely for a number of reasons that are beyond the point of this post.

As it turns out, Dr. M is, among other things, a lyme literate medical doctor (LLMD).  She wants to investigate the possibility that a chronic bacterial infection like lyme, borrelia, bartonella, or babesia is at the root of my problems.  In her view, many patients who present with ME/CFS-type symptoms actually have a chronic bacterial infection at the root.  (She didn't actually say "many" but that's the way I interpreted her words.)

I told her I want something more than a clinical diagnosis of lyme before I consider lyme treatments. It's my understanding that many LLMDs will basically diagnose anything that moves with lyme disease.  I know that the ELISA and Western Blot blood tests for lyme are extremely flawed (way too insensitive to catch most cases of lyme), but I need to see something tangible.  At the same time, I'm wary of the IGeneX test, which has the opposite problem.  People criticize it for having too many false positives. (Some say it comes back positive 94% of the time, and that IGeneX has been or is being investigated by the FDA because of it!)  

Dr. M still says the IGeneX test is accurate but, in the end, we mutually decided to go with a sort of middle ground: the Stony Brook test for lyme.  I don't know anything about this test at the the moment, so I will have to research it and report back.  Dr. M made it sound as if it was more sensitive than ELISA and Western Blot, but less sensitive than IGeneX.   

I told doctor M that I'm going to approach this with a fair amount of skepticism.  She seemed to completely understand.  She said we'd take it step by step and she feels that, in time, she'll be able give me sufficient confidence in the results: positive or negative.  So I'm going to keep an open mind, but with a mix of healthy skepticism.  

Either way, positive or negative, she feels confident she'll be able to help me continue to improve. I like that she's confident but not cocky.   

My next appointment is in late March.  I'll keep updating on appointments with Dr. M...

Monday, January 12, 2015

2014 - My Health in Review

2014 saw significant improvement for me again.  Based on an average of all 365 days of my daily health chart, my daily health rating went up almost four percentage points from 2013. (And 2013 was over 5 points higher than 2012).  So clearly I'm headed in the right direction.  Of course, this all assumes that my ratings system stays consistent over time, (which I think it has--I use certain benchmarks to ensure that--but it's hard to be 100% certain.)

On my daily health chart, besides giving myself a daily overall health rating, I keep track of what I call my "big three" symptoms, each on a scale of 1-10:  (1) flu-like inflammation & fatigue, (2) air hunger / shortness of breath, and (3) kidney-area flank pain.  In 2014, only 26 days out of 365 recorded any flank pain whatsoever (7%), and no entry for flank pain was over a 4 out of 10.  

So when I created a new spreadsheet for my 2015 health chart, I eliminated the "flank pain" column.  Ah, but ME/CFS giveth and taketh away.  I had to replace that column with a column for prostate pain, as that seems to be my new nemesis.  Consistent with what many other ME/CFS patients have written online, it often seems as if the pain and inflammation associated with this disease simply migrates around the body, camping out in one area for a few years before mysteriously moving onto another area.

My 2013 year-end review, posted last January, said that maybe 2014 would be the year that I started to cut back on supplements and see which ones I truly need.  Well, that hasn't happened yet, for various reasons, but I'm renewing that goal for 2015.  I'll be starting work with a new doctor soon, and she has promised to help fine-tune my supplement routine.  

As I wrote about a few weeks ago, I quit Dr. Yasko's program after almost two years of experimentation.  I'm going to continue with a few "short route" methylation supplements for the time being, but have stopped experimenting with vitamin b12 and "long route" supplements.  They simply haven't worked out no matter how slowly I titrate, or how small a dose, or how long I gave myself to push past "start-up reactions".  I mean, yes, I can take a molecule of B12 and be OK, but any substantial dose whatsoever brings on nerve inflammation and brain fog.  So I'm done experimenting.  It doesn't seem that I really need methylation to make improvements right now, so why keep messing with it?   

Overall, 2014 saw a large return of functionality for me, in ways that just weren't possible a year or two ago.  I still have a long way to go, and I realize that the trend could reverse at any time, but for now I'm just trying to enjoy every day in which I don't feel like I did a few years ago.   

Thursday, January 8, 2015

On Celebrex, Pain, and My ****

[This post contains some detailed descriptions dealing with male anatomy.  If that bothers you, don't read on.]

Just after Christmas, my prostate pain came back.  Truthfully, it never went away, but for most of December it had become mild.  Then it stoked back up for no clear reason.

(I'm trying not to let this blog turn into "My Prostate Blog," but it's what's on my mind lately.  I noticed that my click-rate falls when I blog about this topic, probably because half the population has trouble relating.  But I don't blog for clicks anyway.)

I returned to my urologist and told him that we had no other choice but to do "the test."  As I wrote in previous posts, the best way to know if one's prostatitis is bacterial or non-bacterial is to have a doctor "massage" the prostate (yes, by insertion of a finger through the anus), and then test the fluid that's forced out.  (The fluid isn't semen, but one component of it.) 

From September to November I took a constant string of antibiotics based on my urologist's mere guess that my problem was bacterial.  Many doctors think nothing of prescribing long term antibioticsthey're apparently not up on the latest research about the importance of healthy gut flora. I had reluctantly gone along with antibiotics through the end of November, but when the pain came back, I'd had enough of the indeterminacy.  

My urologist kept delaying testing the prostate fluid because he said the process of forcing it out is painful and sometimes makes prostatitis worse.  I said I had to know before taking any more antibiotics.  I like information, not guesswork.  PLUS, if the test comes back positive, we would know exactly what type of bacteria we're dealing with and what type of antibiotic to use.  

So we did the test.  It was painful, but not excruciating.  In fact, I felt much better for about 2 or 3 days after the test -- something many prostatitis patients experience.  Apparently, draining some of the fluid in the prostate often eases the pain.

To help with the pain until the test results come back, the doctor prescribed Celebrex.  I've never tried it before, but so far it seems to be helping quite a bit.  As far as I can tell, Celebrex has no euphoric affect like Vicodin, Percocet, or Ultram (which is good when I need to work), but seems to reduce the inflammation a lot.  So far, it's been a good week for pain.