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, 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.]