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.
Saturday, January 9, 2016
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....
Saturday, January 2, 2016
2015 was first year my health regressed
Quantifying the Regression
Ever since I first became ill in 2011, I've been keeping track of my daily health rating on a chart. I try to use certain benchmarks to ensure that equivalent level of health get the same rating from month to month and year to year.
At the end of each month, I calculate an average for the month, and and the end of each year, I calculate an average for the year. I have steadily improved with each year from 2011 to 2014, with a particularly large improvement in the average of 2014 over 2013. However, 2015 was the first year that had a lower average than the previous year.
Overall, this result isn't too surprising. When I first became ill in 2011, it felt like there was nowhere to go but up. (In reality, that's not completely true -- many of my fellow patients have shown me that I could be much worse.) But the point is, the more one improves, the less room there is for additional improvement. I knew that eventually I would have to, at the very least, level out or regress slightly.
The good news is that 2015 was still my second best year out of the 5 I've recorded, and the average was much closer to the 2014 high than the second highest year of 2013. So this is all good news if I can keep from backsliding further.
Ever since I first became ill in 2011, I've been keeping track of my daily health rating on a chart. I try to use certain benchmarks to ensure that equivalent level of health get the same rating from month to month and year to year.
At the end of each month, I calculate an average for the month, and and the end of each year, I calculate an average for the year. I have steadily improved with each year from 2011 to 2014, with a particularly large improvement in the average of 2014 over 2013. However, 2015 was the first year that had a lower average than the previous year.
Overall, this result isn't too surprising. When I first became ill in 2011, it felt like there was nowhere to go but up. (In reality, that's not completely true -- many of my fellow patients have shown me that I could be much worse.) But the point is, the more one improves, the less room there is for additional improvement. I knew that eventually I would have to, at the very least, level out or regress slightly.
The good news is that 2015 was still my second best year out of the 5 I've recorded, and the average was much closer to the 2014 high than the second highest year of 2013. So this is all good news if I can keep from backsliding further.
Explaining the Regression
Explaining the regression is more difficult than quantifying it. Until April, the year of 2015 was on pace to be an even better year than 2014. March, 2015, was my best month ever. I almost felt like a normal healthy person that month. I was beginning to think that I would soon be considered "in remission." (By some people's standards, I already am in remission, but not by mine.)
In April, my health started to regress. Two things happened in or around that time frame. One was that I began to cut back on some of my supplements, at the recommendation of my new doctor. The other thing was that I had a stressful arbitration at work. Is is possible the stress from the arbitration triggered the regression? I doubt it, but it's a possibility.
My symptoms seem to evolve slowly over time. In 2014, my main non-PEM symptom was groin pain. That issue was mostly resolved by early 2015. In the second half of 2015, my issue became chronic shortness of breath (SOB) and post nasal drip (PND) (always together.) Another explanation for the lower rating this year might be that I couldn't ignore the SOB as easily as the groin pain. With the groin pain, I often wondered if it was even related to my illness. Some days, even with significant groin pain, I rated my health highly. SOB on the other hand, more directly affects one's daily activities, so it was more likely to reduce my daily rating significantly.
I continue to explore an explanation for this SOB and PND through a pulmonologist. I will update those results in the coming weeks.
Where Do I Go From Here?
I feel perhaps more confused now than I have at any time since my "acute phase" in 2011. I have a diagnoses of Lyme disease, which is questionable. There are many different directions I could go from here, but I don't know exactly how to proceed. In November, I started adding back in some of the supplements that I had cut out earlier in the year, particularly ImmunoStim (an immune modulator) and B Complex, among others.
My plan is to continue to try to confirm or rule out the Lyme diagnosis. At the same time, I will try the herbal tinctures my doctor recommends. The question is: how long do I give these Lyme treatments when I'm not totally certain Lyme is my problem? To be honest, I don't have a plan for that right now, but hope to have one by the end of January. In other words, my only plan right now is to make a better plan.
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 water—for instance, a water cooler at work—always 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.
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.
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:
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?
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