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

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

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-inflamatories 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.