I've been writing about my efforts to understand my shortness of breath (SOB) and post nasal drip (PND), which always wax and wane together. I had recently come to the conclusion that both symptoms are caused by inflammatory cytokines. This would essentially mean that there is nothing I can do about the SOB/PND except for the usual, marginally effective measures: paleo diet, immune modulating supplements and (sometimes) drugs, lifestyle management. These of course never make the problem go away, they simply make the problem more manageable.
My pulmonologist recommended that I see an allergist as a last resort. I made an appointment with the allergist but nearly cancelled after wondering: what's the point? In the end, I decided to keep the appointment. My reasoning was: if the allergist can identify even one environmental trigger (such as, for instance, dust), then there's one more piece of information I can use to help reduce incidents of runaway inflammation. It certainly won't solve all my problems, but it would be one more small piece of the puzzle.
The allergist I visited yesterday (Dr. L) was very impressive. You know that feeling when you meet with one of those rare doctors who seems equally as invested in your health mystery as you? That's a good feeling. She's been practicing for less than five years. Sometimes I find that the younger doctors, while less experienced, are the best because they finished medical school more recently. Medical knowledge is evolving so rapidly that doctors who have been practicing more than about 15 years are often clueless about chronic complex conditions. Plus, younger doctors haven't yet been worn down by years and years of listening to people complain (can you imagine?). They still have some empathy left to give. I don't mean this to sound age-ist. There are some wonderful older doctors too.
Dr. L spent about a half an hour with me. She said my nasal passages were "incredibly inflamed." Her preliminary theory is that the inflammation (the cause of which is still to be determined) is producing mucous, which in turn drips down my throat and causes the SOB. I'm not so sure about the mucous being the cause of the SOB (highly questionable), but at least she's the first doctor who has attempted to tie the two symptoms together. Because, to me, they are clearly related.
I'm supposed to come back for a "scratch test" next week. I hope this test will explain why I seem to react to my car.
Wednesday, January 20, 2016
Tip for FIR sauna users: always pre-heat
I continue to use my Far Infrared (FIR) Sauna 2-3 times per week. I feel fairly confident it is helping detoxify my body. One thing I'm absolutely certain about: it improves my sleep. I always have a better night's sleep after a sauna session.
Yet there was a mystery I could never solve: why do I sometimes emerge from the sauna drenched in sweat and other times I barely sweat at all. The times when I came out dripping with sweat were the times when I felt better and slept better afterwards. Thus I felt it was important to figure out how to have the full-sweat experience every time. Up until recently, my leading theory was that a low-sweat sauna session meant I was dehydrated.
I finally figured out recently that there is a correlation between the times I pre-heated the sauna and the times I sweated more in the sauna. I vaguely recall that when I purchased the sauna, the manufacturer told me to heat it before getting inside. As the years went by, when I didn't have the patience to pre-heat the sauna, I started getting inside as soon as I turned it on and then I would wait for it to heat up while I was inside. I would add time to the end of my sauna session to make sure I still got a full half hour of maximum heat.
Just as they say frogs don't know they're being boiled alive if you start them in cold water and slowly increase the temperature (I wouldn't know, I've never cooked frog), the human body seems much less reactive to heat if you bring the temperature up slowly. Based on my experience, it's critical to getting the most out of my FIR sauna to "shock the system" by getting into an already hot sauna.
Yet there was a mystery I could never solve: why do I sometimes emerge from the sauna drenched in sweat and other times I barely sweat at all. The times when I came out dripping with sweat were the times when I felt better and slept better afterwards. Thus I felt it was important to figure out how to have the full-sweat experience every time. Up until recently, my leading theory was that a low-sweat sauna session meant I was dehydrated.
I finally figured out recently that there is a correlation between the times I pre-heated the sauna and the times I sweated more in the sauna. I vaguely recall that when I purchased the sauna, the manufacturer told me to heat it before getting inside. As the years went by, when I didn't have the patience to pre-heat the sauna, I started getting inside as soon as I turned it on and then I would wait for it to heat up while I was inside. I would add time to the end of my sauna session to make sure I still got a full half hour of maximum heat.
Just as they say frogs don't know they're being boiled alive if you start them in cold water and slowly increase the temperature (I wouldn't know, I've never cooked frog), the human body seems much less reactive to heat if you bring the temperature up slowly. Based on my experience, it's critical to getting the most out of my FIR sauna to "shock the system" by getting into an already hot sauna.
Friday, January 15, 2016
Next iOS update will include nighttime amber-shift
[I originally posted this on Phoenix Rising, but I felt it was important enough to spread the word here as well...]
Up until now, there's only been the Lux app, which was strictly for jailbroken iPhones and iPads. I never wanted to jailbreak my devices so I settled for not using my devices at night. This is a much better solution.
Wednesday, January 13, 2016
I now know what's causing my shortness of breath
I've been writing recently about my efforts to figure out what's causing my debilitating air hunger, which is always accompanied by post nasal drip (PND). (Here and here.) It comes and goes, but over the last two months or so, I've noticed that it has become more permanent. I no longer get any days off -- it is there every day. Now its only a question of severity.
I know now what's causing it: inflammatory cytokines. I'm reasonably certain of that.
The pulmonologist found no problems with my lungs or heart. I'm still pending an allergy evaluation (next week), but I doubt that will find anything.
Here's what I know:
Exertion - Even walking now seems to trigger it. A flight of stairs: definitely.
Coffee and other stimulants - The strange thing is, even decaffeinated coffee triggers it. I believe that even the small amount of caffeine in decaf coffee is sufficient to make it worse. Much worse actually.
My car - This is the one that doesn't quite fit with the others. My first thought was, maybe I'm reacting to something in my car, particularly in the ventilation system. Other times I've thought, maybe it's simply because every time I'm in my car, my presence there was preceded by exertion: gathering my things and walking to the car. But I don't think that's the explanation.
Nothing, except avoiding the things that make it worse. I've tried Monolukast, inhalers, tea, mold and chemical avoidance, diet, anti-inflammatory drugs, Azelastine, and Flonase. None of that makes a difference.
My conclusion is: This has to be inflammation triggered by cytokines. We've ruled out nearly everything else. Exertion and stimulants are two factors known to trigger an inflammatory response in people with ME/CFS. The car as a trigger is less easy to explain, but I feel there may be an environmental trigger to the inflammation as well.
I've been ill with ME/CFS for 4.5 years, generally the time frame when, as studies have shown, a person's cytokine profile changes.
Shortness of breath was a major symptom of my acute phase in 2011, but then it went away for the most part, for the next 3 years. During that time, it was only sporadic, fairly rare, and not too severe when it did come. It was not accompanied by PND like now. I enjoyed a higher than average exertion tolerance compared to some other patients during that period. Basically, I was able to do most day-to-day activities without fear of triggering a major crash. (I dealt with a host of other problems, but hair-trigger SOB wasn't one of them.) I wasn't like a normal person who could go running or play basketball, but I could climb a flight of stairs and feel OK generally. That may be changing now.
Some people say that SOB in ME/CFS is not a matter of lung function or blood oxygen levels (my blood oxygen levels are fine) but rather the body's inability to use the oxygen efficiently. I don't think that's the problem in my case because the SOB always gets better and worse in lock step with PND. It makes more sense to me that inflammatory cytokines would be causing lung inflammation and at the same time, causing my sinuses to produce mucous. The inefficient use of oxygen theory doesn't explain the PND.
I know now what's causing it: inflammatory cytokines. I'm reasonably certain of that.
The pulmonologist found no problems with my lungs or heart. I'm still pending an allergy evaluation (next week), but I doubt that will find anything.
Here's what I know:
Things that make it worse:
Exertion - Even walking now seems to trigger it. A flight of stairs: definitely.
Coffee and other stimulants - The strange thing is, even decaffeinated coffee triggers it. I believe that even the small amount of caffeine in decaf coffee is sufficient to make it worse. Much worse actually.
My car - This is the one that doesn't quite fit with the others. My first thought was, maybe I'm reacting to something in my car, particularly in the ventilation system. Other times I've thought, maybe it's simply because every time I'm in my car, my presence there was preceded by exertion: gathering my things and walking to the car. But I don't think that's the explanation.
Things that make it better:
Nothing, except avoiding the things that make it worse. I've tried Monolukast, inhalers, tea, mold and chemical avoidance, diet, anti-inflammatory drugs, Azelastine, and Flonase. None of that makes a difference.
Therefore....
My conclusion is: This has to be inflammation triggered by cytokines. We've ruled out nearly everything else. Exertion and stimulants are two factors known to trigger an inflammatory response in people with ME/CFS. The car as a trigger is less easy to explain, but I feel there may be an environmental trigger to the inflammation as well.
I've been ill with ME/CFS for 4.5 years, generally the time frame when, as studies have shown, a person's cytokine profile changes.
Shortness of breath was a major symptom of my acute phase in 2011, but then it went away for the most part, for the next 3 years. During that time, it was only sporadic, fairly rare, and not too severe when it did come. It was not accompanied by PND like now. I enjoyed a higher than average exertion tolerance compared to some other patients during that period. Basically, I was able to do most day-to-day activities without fear of triggering a major crash. (I dealt with a host of other problems, but hair-trigger SOB wasn't one of them.) I wasn't like a normal person who could go running or play basketball, but I could climb a flight of stairs and feel OK generally. That may be changing now.
Some people say that SOB in ME/CFS is not a matter of lung function or blood oxygen levels (my blood oxygen levels are fine) but rather the body's inability to use the oxygen efficiently. I don't think that's the problem in my case because the SOB always gets better and worse in lock step with PND. It makes more sense to me that inflammatory cytokines would be causing lung inflammation and at the same time, causing my sinuses to produce mucous. The inefficient use of oxygen theory doesn't explain the PND.
Tuesday, January 12, 2016
About that Probiotics Cure....
There's an article being shared around the ME/CFS blogosphere about a patient who essentially cured herself by deciding, after some research, to put herself on a regimen of high dose probiotics (about 300 billion CFUs per day.) It's pretty exciting if her results can be replicated. Even if one other person can replicate these results in themselves, I will be fairly ecstatic. Although, my excitement is tempered by the thought: someone must have tried this before, right? If we've never heard about anyone else being cured this way, maybe it's because it hasn't worked for others.
This article came to my attention at an interesting time for me because, two weeks ago, I decided to start ramping up my intake of probiotics for two reasons: (1) I continue to see a steady flow of new articles and research about the importance of gut flora to overall health, even from mainstream media (i.e. non-ME/CFS media), and (2) I read the blog of another ME/CFS patient who has had success taming candida with about 60 billion CFU's per day.
In the past, I had always found that I had trouble taking more than about 10 billion CFU's per day. I would feel inflamed and slightly flu-ish. But this time, using different brands and strains of probiotics that I selected more carefully, I have not had any trouble titrating up to 40 billion CFU's per day. So far there's been no dramatic improvement, but I'm hopeful. I don't think I will go as high as 300 billion like the author of the article, but I'm taking it day by day at this point.
This article came to my attention at an interesting time for me because, two weeks ago, I decided to start ramping up my intake of probiotics for two reasons: (1) I continue to see a steady flow of new articles and research about the importance of gut flora to overall health, even from mainstream media (i.e. non-ME/CFS media), and (2) I read the blog of another ME/CFS patient who has had success taming candida with about 60 billion CFU's per day.
In the past, I had always found that I had trouble taking more than about 10 billion CFU's per day. I would feel inflamed and slightly flu-ish. But this time, using different brands and strains of probiotics that I selected more carefully, I have not had any trouble titrating up to 40 billion CFU's per day. So far there's been no dramatic improvement, but I'm hopeful. I don't think I will go as high as 300 billion like the author of the article, but I'm taking it day by day at this point.
Saturday, January 9, 2016
Pulmonologist was a bust
A few weeks ago, I decided to take another run at finding answers for and getting relief from my shortness of breath. My worsening shortness of breath and post nasal drip has led to a significant decrease in quality of life over the last 6 months.
Several of my fellow patient-friends predicted that the pulmonologist visits would be a waste of time, and they were right in the end. On some level, I knew that they probably would be correct, as I've never had much luck with non-ME/CFS specialists. On the other hand, patients say you should never ignore new or worsening symptoms just in case your ME/CFS has lead to another disease. For instance, with our weakened immune systems, we are more susceptible, statistically, to certain types of cancer. So I went anyway.
The pulmonologist (Dr. S) ordered a CT scan (without contrast) and an echocardiogram, thinking that perhaps my slight pectus excavatum was pushing on the pulmonary artery. My heart and lungs checked out fine on these tests, plus the Monolukast prescription turned out to be ineffective.
As one last effort, he sent me away with a 14 day sample of an inhaler, noting that I had performed 9% better on a spirometry test after trying an inhaler. I suspect the 9% improvement was due to vagaries of the testing conditions, but the sample is free so I will try it anyway. He prescribed an Ellipta inhaler. Today, as I write this, I am on day 1 of the inhaler experiment, and am breathing well, but it's far too early to draw any conclusions.
Finally, he referred me to an allergist for a full allergy evaluation. I'm going to follow through with that evaluation. Again, it probably won't lead to any new answers, but I have to try.
Several of my fellow patient-friends predicted that the pulmonologist visits would be a waste of time, and they were right in the end. On some level, I knew that they probably would be correct, as I've never had much luck with non-ME/CFS specialists. On the other hand, patients say you should never ignore new or worsening symptoms just in case your ME/CFS has lead to another disease. For instance, with our weakened immune systems, we are more susceptible, statistically, to certain types of cancer. So I went anyway.
The pulmonologist (Dr. S) ordered a CT scan (without contrast) and an echocardiogram, thinking that perhaps my slight pectus excavatum was pushing on the pulmonary artery. My heart and lungs checked out fine on these tests, plus the Monolukast prescription turned out to be ineffective.
As one last effort, he sent me away with a 14 day sample of an inhaler, noting that I had performed 9% better on a spirometry test after trying an inhaler. I suspect the 9% improvement was due to vagaries of the testing conditions, but the sample is free so I will try it anyway. He prescribed an Ellipta inhaler. Today, as I write this, I am on day 1 of the inhaler experiment, and am breathing well, but it's far too early to draw any conclusions.
Finally, he referred me to an allergist for a full allergy evaluation. I'm going to follow through with that evaluation. Again, it probably won't lead to any new answers, but I have to try.
Dr. Cheney's protocol - some thoughts
Health Rising has a 3-part article from a patient who blogged about Dr. Cheney's ME/CFS protocol - at least the version he's offering to this particular patient. (Based on the accounts we read from his patients, Dr. Cheney's protocol always seems to be evolving as the good doctor searches for the ultimate combination of treatments.)
I'm posting a link to the 3-part article (below) because it dovetails with something I've been thinking about recently: I must find a way to be more comprehensive and systematic with my ever evolving treatment plans. I work with two doctors who want to go in different (not necessarily inconsistent) directions with my treatment plan. I also use a handful of treatments that I've simply picked up from "the community." With all this disparate input into my treatment regimen, I need to make sure that these treatments are all consistent with one another and that I've got all my bases covered.
I think most of us recognize that ME/CFS is a multi-system disorder and that, in the absence of a cure, we end up treating each broken system as best we can. But when treating different systems, seeing the "big picture" is one of the greatest challenges. If you have doctor like Cheney who sort of specializes in seeing the big picture, then you're ahead. But my two doctors have more narrow focuses, so the job of seeing the big picture falls to me.
In short time, I'm going to post my new plan for making sure my treatments are consistent and all my "broken systems" are being addresses with at least one treatment that is consistently recognized as effective by ME/CFS doctors and the community. Until that post, here is the 3 part article I referred to above....
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