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.
Tuesday, December 29, 2015
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?
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