So, after seeing Kenny DeMeirlier in Reno, and talking on the phone with him in Brussels, I found out a few very important things, the first of which is that I love antibiotics. If it were legal in my state, I would possibly marry antibiotics, so long as I could have final say in how we'd raise the children.
But before this, I was so terrified of antibiotics. Let me explain:
1) I come from the natural health care field. You guys know this. What you may not know is that we demonize antibiotics. For good reason! You can get recurrent infections, resistant infections... and you are literally ingesting poison. If it can kill bacteria, guess what? It's poisonous to you too.
2) Nevertheless, I was not one of those hard-liners that said, "you have a broken bone? Aren't you going to at least try arnica first?" My stance before I was hit with this wrecking ball of an illness was that allopathic medicine has its place and natural medicine has its place.
That place was in acute versus chronic conditions, respectively.
3) I just don't take prescribed medicine. I handle things myself. This derives from the Protestant work ethic I inherited from my mother's side of the family. This do-it-yourself, pull-yerself-up-by-yer-bootstraps self-sufficiency is probably what really led me to herbal medicine in the first place.
That, and CFS, which I also inherited from my mother's side of the family.
4) I was horrified to learn that people with ME react to everything. In a classic example of how no one understands this but us, I was talking to an otherwise very helpful physician today who said to me, "I've got to get probiotics into you somehow. Can't you at least try a little dairy?" To which I reluctantly nodded, even while I vowed with the fervor of She Who Hath Been Burnt Before to avoid dairy like I avoided that bathroom scale after Christmas. I like to breathe. Why can't anybody understand that?
To make a long story short, I thought there was a possibility that if I swallowed an antibiotic, I might have a seizure and die.
It's funny because it's true!
So, what actually happened when I took antibiotics?
Okay, well, it wasn't all puppies and sunshine. (Are any of you guys allergic to puppies or sunshine? I'm sorry!) In fact, the nuchal pain (encephalitic pain, if you like) got significantly worse, especially at first. I started low and went slow, and ended up supplementing with phosphatidyl choline at the suggestion of a local nutritionist and herb guru / medical researcher / businessman I've known for some time. It worked like a charm paired with the DHA that KDM recommended. I popped those phosphatidyl choline pills like nobody's business. The pain started up, I took one again.
Then, a magical thing happened. It was like a huge weight lifted off my shoulders. I could focus again! I felt stronger! And, whether for psychologic or physiologic reasons, I felt hopeful again. I was improving for the first time after a very long plateau. It felt like rising above the clouds, or waking up after being half-asleep for ages and taking a first look around, and other uplifting metaphors as well.
There were no weird reactions. I felt a bit dizzier at first, and I quickly learned not to lie down after taking an antibiotic. (Reflux! Owww.) I took it with food, realized I couldn't take it with my TN Healthy Feet and Nerves (why? No idea!) and needed a lot more CoQ-10.
So, what actually happened when I stopped taking the antibiotics?
It was bad, guys.
No additional infections occurred, but there was a definite rebound, which I think I aided by continuing to take a lot of CoQ-10 (which might have been feeding the bloom). For a week or two I felt wrung-out, which felt even awfuller than usual in the context of my late, lamented vigor. On the bright side, suddenly I went from taking seven to nine pills at a time down to needing three or four. For awhile, I was down to Vitex, Vitamin D, and TN Healthy Feet and Nerves. Only, I had to take the TNHF&N separate from the others, because it now seems to not mix so well with them... why? No idea! The antibiotic didn't like it, either; maybe it had led a coup d'etat and convinced the others. Anyway, I space it out a bit, now.
I added back Lactoferrin, and if I feel wiped out, I'll take a single CoQ-10 pill. That's it. Over time, I recovered from the re-bloom, and overall I am healthier than before I started.
Unfortunately, the Ornidazole KDM had recommended was tough for me to get: I could order it through a Canadian drug company, who then had it shipped in from New Zealand. It took months and a lot of phone calls, emails and paperwork to make that happen. I asked for a second scrip for more Ornidazole, but also talked about how tough it was to come by, here.
The result is that I have a bunch of Ornidazole sitting here, but my trials also procured a scrip for Metradazole instead. Metradazole is Ornidazole's scary, American cousin, the kind that shows up at a fancy dress party, gets rip-roaring drunk and falls off a table while singing loudly and off-key. Probably Freebird, for maximum embarrassment in the eyes of your posher friends.
I was reliably informed by my pharmacist to avoid drinking any alcohol or anything with any alcohol as an ingredient (read: vanilla extract), using or getting near perfume, or existing in the same dimension as alcohol. Needless to say, I made the mistake of encountering alcohol through the course of eating any food ever, and spent most of my days on the Mdazole feeling like I might toss my cookies at any moment. (Did you know that sushi rice contains rice wine vinegar, a few molecules of which are still rice wine? Now you do!)
I've now taken three antibiotics: ornidazole, clindamycin, and metradazole. The first two are golden, and the last can die in a fire.
Due to the difficulties contacting KDM and the slowness of Getting Stuff Done, I've still been looking for someone local who can liaise with KDM and/or provide treatment options that are harder to get at a distance. A local endo referred me to an immunologist in my area who tested me for a bunch of things, including IgA (which I hadn't had measured in five years), IgE, the IgG subclasses, Epstein-Barr (believe it or not, no one had, yet), CBC, Lyme, and a few of the other Usual Suspects.
He seemed okay on our first appointment, but those are an ME patient's famous last words, aren't they?
Lab Results:
He performed an EBV test that was pretty exhaustive. It included a marker for 'early' EBV, VCA IgG AB, EBV nuclear antibody IgG, and EBV VCA IgM. The IgG values lit up like a Christmas tree (higher than they bother to measure; I got the dreaded > sign.) One of the Lyme bands was positive out of ten, but no other beasties made so much as a blip. My IgG1 and IgG4 were low-normal. My IgE is through the roof, over 300-mg/dL. For perspective, the average value is 13-mg/dL. My IgA is pretty low, in the 60s.
The IgE is higher than it was a year ago, and the IgA is lower. And here I thought I was doing better! Maybe they're all... like, fighting off infection and stuff, so...
And the doctor said...?
At first, he was being very conservative, saying what I expected to hear. "Your IgG4 is low, but it's technically within range. It does fluctuate a little in everyone." (Mine was 4.0 in a scale ranging from 4.0 to 86 units!) I pointed out I'd had it done a year ago and it was almost exactly the same (5.0, back then). "Your IgA is really low, though," he said, and I pointed out something I'd heard here, which is that doctors don't necessarily consider that to be significant. "It's significant," he said. "It's significant because you will be more susceptible to infection all your life, especially in the gut and respiratory system." He told me my EBV titres showed past infection but not recent infection. Everything the labs said, really, he explained, with a conservative interpretation.
I had pretty much resigned myself to the typical doctor experience. Blah-de-blah nothing significant (read: nothing I understand as significant), but apparently that was just the first part of our show. After he felt he'd done his doctorly duty by explaining what the lab tests meant, he said, "We're going to run that EBV test again."
I made some surprised noise. Like, the ones you said definitely proved I had an infection in the past and not a present infection? Yup, those. Apparently, he either doesn't believe the test is very good, or he is in the Montoya camp and thinks that EBV 'hides out' and reactivates, and is hoping to catch it in the act.
"Some of the other infectious ones too. Let's repeat them." He eyed me. "The lab techs over there make a lot of mistakes. Let's try a few of these again. Okay? Okay."
Somehow he implied, "out here in Tumbleweed, USA" and/or "that cheap, worthless excuse for a commercial 'lab'" with that conspiratory lean. Well... sure. Why not, whatever, a few dozen more labs, sure. I've got enough blood to go around.
He asked if I was all right with taking a broader-spectrum antibiotic to try and cast a wider net for two weeks before running those labs again.
I said feel awesome about antibiotics. As demonstrated above.
My impression is that he'd like me to be on a low dose of antibiotics over a long period of time and see if it improves my IgG and IgA values especially. He said if it doesn't, he'd want me to switch to (or add?) immunoglobulin infusions... for the IgG that isn't "technically" low.
I told him not to bother with the CBC... everything there is always dead-center normal, which is part of the reason I'm so tough to diagnose, and so it's a waste of blood and money.
"They're not normal," he said, "not in the context of everything else."
CONTEXT? WHAT IS THIS 'CONTEXT' OF WHICH YOU SPEAK?
My WBCs are in range, but not right for a healthy person. (My own resources say so, too.) Finding a doctor who understands the difference is like finding a diamond in a Crackerjack box.
The only thing I don't get is that IgA infusions DO exist. I wonder what he meant by saying they didn't. He might mean that they are difficult to get locally -- or even in the U.S. -- while IgG infusions are done all the time.
On top of all this, when I went to the pharmacy to fill the scrip, it turned out my pharmacist has a serious crush on this guy, and the lady behind me said she'd been his patient and he was the absolute best. So I have hope.
Nice to see you guys again! I've been freelance writing up a storm and TAing prodigious amounts of Organic Chem... hope everyone is as well as can be expected!
-J
Edit:
@msf said that antibiotics raising IgA and IgG sounds a bit funny, and on reflection, I think the doctor was referring to the effect the antibiotics had on my WBCs, not my immunoglobulins.
@Aurator let me know on the forums that IgA from other people's blood can cause severe allergic reactions. Given how reactive PWME are to the universe, perhaps the doctor's right and it's not such a brilliant plan...
I thought I read at one point that IgG infusions help with IgA deficiency, but I couldn't make sense of that in my head, so I dismissed the idea. However, according to this article, about 1 in 6 patients recieving Ig replacement therapy had IgA deficiency. So, were they given IgA, despite the allergy issue?
Edit 2:
IgG infusions contain small amounts of IgA. In some people with IgA deficiency, the reason their IgA is low is that they have developed antibodies against their own IgA. These are the people who are made more ill by the infusion. However, someone without autoimmunity with isolated IgA deficiency could still benefit from 'IgG' infusions.
Also I should add that I've been off the antibiotics two full days and no re-bloom with the Clindamycin-Mdazole combo. I'm not taking CoQ-10 this time. However, it's important to keep in mind that I was actually a lot sicker the first time around, too. Unfortunately, medicine is messy and doesn't occur in a vacuum, especially when you are getting better or worse.
Keep healthy, guys! (As much as you can.) <4 because of just that much love.
-J
<----Previous in this series
<----First in the series
.
.
But before this, I was so terrified of antibiotics. Let me explain:
1) I come from the natural health care field. You guys know this. What you may not know is that we demonize antibiotics. For good reason! You can get recurrent infections, resistant infections... and you are literally ingesting poison. If it can kill bacteria, guess what? It's poisonous to you too.
2) Nevertheless, I was not one of those hard-liners that said, "you have a broken bone? Aren't you going to at least try arnica first?" My stance before I was hit with this wrecking ball of an illness was that allopathic medicine has its place and natural medicine has its place.
That place was in acute versus chronic conditions, respectively.
3) I just don't take prescribed medicine. I handle things myself. This derives from the Protestant work ethic I inherited from my mother's side of the family. This do-it-yourself, pull-yerself-up-by-yer-bootstraps self-sufficiency is probably what really led me to herbal medicine in the first place.
That, and CFS, which I also inherited from my mother's side of the family.
4) I was horrified to learn that people with ME react to everything. In a classic example of how no one understands this but us, I was talking to an otherwise very helpful physician today who said to me, "I've got to get probiotics into you somehow. Can't you at least try a little dairy?" To which I reluctantly nodded, even while I vowed with the fervor of She Who Hath Been Burnt Before to avoid dairy like I avoided that bathroom scale after Christmas. I like to breathe. Why can't anybody understand that?
To make a long story short, I thought there was a possibility that if I swallowed an antibiotic, I might have a seizure and die.
It's funny because it's true!
So, what actually happened when I took antibiotics?
Okay, well, it wasn't all puppies and sunshine. (Are any of you guys allergic to puppies or sunshine? I'm sorry!) In fact, the nuchal pain (encephalitic pain, if you like) got significantly worse, especially at first. I started low and went slow, and ended up supplementing with phosphatidyl choline at the suggestion of a local nutritionist and herb guru / medical researcher / businessman I've known for some time. It worked like a charm paired with the DHA that KDM recommended. I popped those phosphatidyl choline pills like nobody's business. The pain started up, I took one again.
Then, a magical thing happened. It was like a huge weight lifted off my shoulders. I could focus again! I felt stronger! And, whether for psychologic or physiologic reasons, I felt hopeful again. I was improving for the first time after a very long plateau. It felt like rising above the clouds, or waking up after being half-asleep for ages and taking a first look around, and other uplifting metaphors as well.
There were no weird reactions. I felt a bit dizzier at first, and I quickly learned not to lie down after taking an antibiotic. (Reflux! Owww.) I took it with food, realized I couldn't take it with my TN Healthy Feet and Nerves (why? No idea!) and needed a lot more CoQ-10.
So, what actually happened when I stopped taking the antibiotics?
It was bad, guys.
No additional infections occurred, but there was a definite rebound, which I think I aided by continuing to take a lot of CoQ-10 (which might have been feeding the bloom). For a week or two I felt wrung-out, which felt even awfuller than usual in the context of my late, lamented vigor. On the bright side, suddenly I went from taking seven to nine pills at a time down to needing three or four. For awhile, I was down to Vitex, Vitamin D, and TN Healthy Feet and Nerves. Only, I had to take the TNHF&N separate from the others, because it now seems to not mix so well with them... why? No idea! The antibiotic didn't like it, either; maybe it had led a coup d'etat and convinced the others. Anyway, I space it out a bit, now.
I added back Lactoferrin, and if I feel wiped out, I'll take a single CoQ-10 pill. That's it. Over time, I recovered from the re-bloom, and overall I am healthier than before I started.
Unfortunately, the Ornidazole KDM had recommended was tough for me to get: I could order it through a Canadian drug company, who then had it shipped in from New Zealand. It took months and a lot of phone calls, emails and paperwork to make that happen. I asked for a second scrip for more Ornidazole, but also talked about how tough it was to come by, here.
The result is that I have a bunch of Ornidazole sitting here, but my trials also procured a scrip for Metradazole instead. Metradazole is Ornidazole's scary, American cousin, the kind that shows up at a fancy dress party, gets rip-roaring drunk and falls off a table while singing loudly and off-key. Probably Freebird, for maximum embarrassment in the eyes of your posher friends.
I was reliably informed by my pharmacist to avoid drinking any alcohol or anything with any alcohol as an ingredient (read: vanilla extract), using or getting near perfume, or existing in the same dimension as alcohol. Needless to say, I made the mistake of encountering alcohol through the course of eating any food ever, and spent most of my days on the Mdazole feeling like I might toss my cookies at any moment. (Did you know that sushi rice contains rice wine vinegar, a few molecules of which are still rice wine? Now you do!)
I've now taken three antibiotics: ornidazole, clindamycin, and metradazole. The first two are golden, and the last can die in a fire.
Due to the difficulties contacting KDM and the slowness of Getting Stuff Done, I've still been looking for someone local who can liaise with KDM and/or provide treatment options that are harder to get at a distance. A local endo referred me to an immunologist in my area who tested me for a bunch of things, including IgA (which I hadn't had measured in five years), IgE, the IgG subclasses, Epstein-Barr (believe it or not, no one had, yet), CBC, Lyme, and a few of the other Usual Suspects.
He seemed okay on our first appointment, but those are an ME patient's famous last words, aren't they?
Lab Results:
He performed an EBV test that was pretty exhaustive. It included a marker for 'early' EBV, VCA IgG AB, EBV nuclear antibody IgG, and EBV VCA IgM. The IgG values lit up like a Christmas tree (higher than they bother to measure; I got the dreaded > sign.) One of the Lyme bands was positive out of ten, but no other beasties made so much as a blip. My IgG1 and IgG4 were low-normal. My IgE is through the roof, over 300-mg/dL. For perspective, the average value is 13-mg/dL. My IgA is pretty low, in the 60s.
The IgE is higher than it was a year ago, and the IgA is lower. And here I thought I was doing better! Maybe they're all... like, fighting off infection and stuff, so...
And the doctor said...?
At first, he was being very conservative, saying what I expected to hear. "Your IgG4 is low, but it's technically within range. It does fluctuate a little in everyone." (Mine was 4.0 in a scale ranging from 4.0 to 86 units!) I pointed out I'd had it done a year ago and it was almost exactly the same (5.0, back then). "Your IgA is really low, though," he said, and I pointed out something I'd heard here, which is that doctors don't necessarily consider that to be significant. "It's significant," he said. "It's significant because you will be more susceptible to infection all your life, especially in the gut and respiratory system." He told me my EBV titres showed past infection but not recent infection. Everything the labs said, really, he explained, with a conservative interpretation.
I had pretty much resigned myself to the typical doctor experience. Blah-de-blah nothing significant (read: nothing I understand as significant), but apparently that was just the first part of our show. After he felt he'd done his doctorly duty by explaining what the lab tests meant, he said, "We're going to run that EBV test again."
I made some surprised noise. Like, the ones you said definitely proved I had an infection in the past and not a present infection? Yup, those. Apparently, he either doesn't believe the test is very good, or he is in the Montoya camp and thinks that EBV 'hides out' and reactivates, and is hoping to catch it in the act.
"Some of the other infectious ones too. Let's repeat them." He eyed me. "The lab techs over there make a lot of mistakes. Let's try a few of these again. Okay? Okay."
Somehow he implied, "out here in Tumbleweed, USA" and/or "that cheap, worthless excuse for a commercial 'lab'" with that conspiratory lean. Well... sure. Why not, whatever, a few dozen more labs, sure. I've got enough blood to go around.
He asked if I was all right with taking a broader-spectrum antibiotic to try and cast a wider net for two weeks before running those labs again.
I said feel awesome about antibiotics. As demonstrated above.
My impression is that he'd like me to be on a low dose of antibiotics over a long period of time and see if it improves my IgG and IgA values especially. He said if it doesn't, he'd want me to switch to (or add?) immunoglobulin infusions... for the IgG that isn't "technically" low.
I told him not to bother with the CBC... everything there is always dead-center normal, which is part of the reason I'm so tough to diagnose, and so it's a waste of blood and money.
"They're not normal," he said, "not in the context of everything else."
CONTEXT? WHAT IS THIS 'CONTEXT' OF WHICH YOU SPEAK?My WBCs are in range, but not right for a healthy person. (My own resources say so, too.) Finding a doctor who understands the difference is like finding a diamond in a Crackerjack box.
The only thing I don't get is that IgA infusions DO exist. I wonder what he meant by saying they didn't. He might mean that they are difficult to get locally -- or even in the U.S. -- while IgG infusions are done all the time.
On top of all this, when I went to the pharmacy to fill the scrip, it turned out my pharmacist has a serious crush on this guy, and the lady behind me said she'd been his patient and he was the absolute best. So I have hope.
Nice to see you guys again! I've been freelance writing up a storm and TAing prodigious amounts of Organic Chem... hope everyone is as well as can be expected!
-J
Edit:
@msf said that antibiotics raising IgA and IgG sounds a bit funny, and on reflection, I think the doctor was referring to the effect the antibiotics had on my WBCs, not my immunoglobulins.
@Aurator let me know on the forums that IgA from other people's blood can cause severe allergic reactions. Given how reactive PWME are to the universe, perhaps the doctor's right and it's not such a brilliant plan...
I thought I read at one point that IgG infusions help with IgA deficiency, but I couldn't make sense of that in my head, so I dismissed the idea. However, according to this article, about 1 in 6 patients recieving Ig replacement therapy had IgA deficiency. So, were they given IgA, despite the allergy issue?
Edit 2:
IgG infusions contain small amounts of IgA. In some people with IgA deficiency, the reason their IgA is low is that they have developed antibodies against their own IgA. These are the people who are made more ill by the infusion. However, someone without autoimmunity with isolated IgA deficiency could still benefit from 'IgG' infusions.
Also I should add that I've been off the antibiotics two full days and no re-bloom with the Clindamycin-Mdazole combo. I'm not taking CoQ-10 this time. However, it's important to keep in mind that I was actually a lot sicker the first time around, too. Unfortunately, medicine is messy and doesn't occur in a vacuum, especially when you are getting better or worse.
Keep healthy, guys! (As much as you can.) <4 because of just that much love.
-J
<----Previous in this series
<----First in the series
.
.
