A good kind of freaky...
September 14, 2007 5:33 PM Subscribe
OK, I've been relatively tired and achy all the time, but all at once...
I have symptoms of fibromyalgia (so says my family doctor), I have been always tired, no energy to do more than the basics, pain pretty much daily--in my joints, mostly. This has been going on for, say, a year and a half.
Last week I cracked a wisdom tooth and my dentist said we're just going to pull it--don't need it anyway. He put me on antibiotics and, this is what's weird. Since taking the round of penicillin, I feel better than I have in months. I have so much energy, I just want to go go go. I am cleaning, I am cooking, I want to take long walks, I even sleep better. Coincidence? I can't think of anything I'm doing out of the ordinary to make such a difference; I just know I feel so, well, GOOD. I mean, I feel almost manic, and I don't have a history of mania. What gives? (not that I want to look a gift horse in the mouth...) Thanks for any opinions y'all may have.
I have symptoms of fibromyalgia (so says my family doctor), I have been always tired, no energy to do more than the basics, pain pretty much daily--in my joints, mostly. This has been going on for, say, a year and a half.
Last week I cracked a wisdom tooth and my dentist said we're just going to pull it--don't need it anyway. He put me on antibiotics and, this is what's weird. Since taking the round of penicillin, I feel better than I have in months. I have so much energy, I just want to go go go. I am cleaning, I am cooking, I want to take long walks, I even sleep better. Coincidence? I can't think of anything I'm doing out of the ordinary to make such a difference; I just know I feel so, well, GOOD. I mean, I feel almost manic, and I don't have a history of mania. What gives? (not that I want to look a gift horse in the mouth...) Thanks for any opinions y'all may have.
Maybe some kind of inflammatory process was going on (which was causing the joint pain), and it was all a non-identified chronic infection (which caused the long-term lack of energy), and it was knocked out by the round of penicillin. One of those medical mysteries.
posted by Gerard Sorme at 5:55 PM on September 14, 2007
posted by Gerard Sorme at 5:55 PM on September 14, 2007
I was also thinking along the lines of undiagnosed Lyme Disease, but got bogged down reading about the controversies related to whether Chronic Lyme (now called Post-Lyme Syndrome) exists or not. However, if it did exist, it's possible that you could have had it and been cured by the antibiotics.
Have fun with your new energy. But please, please go back to the doc if you experience any new joint pain.
posted by saffry at 5:56 PM on September 14, 2007
Have fun with your new energy. But please, please go back to the doc if you experience any new joint pain.
posted by saffry at 5:56 PM on September 14, 2007
Me again. one other thing....(I agree with Justinian above, btw, good points all)...but also be careful with the fibromyalgia diagnosis. It's a fad diagnosis that is given when a doctor can't figure out what's causing presenting pain symptoms - especially joint/muscle pain. What I just said will set some people off into a rage - but I don't think there is any question it's a catch-all for any pain that doesn't have an easily diagnosed cause.
posted by Gerard Sorme at 6:02 PM on September 14, 2007
posted by Gerard Sorme at 6:02 PM on September 14, 2007
Another vote for Lymes.
posted by fshgrl at 6:15 PM on September 14, 2007 [1 favorite]
posted by fshgrl at 6:15 PM on September 14, 2007 [1 favorite]
My whole family (Mom, Dad, sister, and myself) were diagnosed with Lymes a few years back, and all of us were on heavy duty antibiotics following the diagnosis. It was a case of it being transmitted sexually from one of my parents to the other, and then to their children. My dizziness and fatigue (my main symptoms) were alleviated quite a bit after a few weeks, and other symptoms my family suffered from went away as well. My Dad was like a new person, much as you're describing. The tests to diagnosis Lymes can be quite expensive, and many doctors tend think of bulls-eye target (from a tick bite) as the only indicator of the disease, but if you're suspicious, there is no harm in bringing it up to a doctor.
posted by zoey08 at 6:55 PM on September 14, 2007
posted by zoey08 at 6:55 PM on September 14, 2007
Now this is the kind of thing that worries me. I don't want to get into an argument here, but this is one reason I even hesitated to bring up Lyme disease.
There is no evidence that Lyme disease can be transmitted from person to person. There has never been a documented case of such transmission. I have no idea what the doctors were telling you, zoey.
wafaa - Talk to your doctor and be your own advocate. Neither ignore what they say if you don't like the answer nor take it for gospel without any skepticism.
posted by Justinian at 7:07 PM on September 14, 2007
There is no evidence that Lyme disease can be transmitted from person to person. There has never been a documented case of such transmission. I have no idea what the doctors were telling you, zoey.
wafaa - Talk to your doctor and be your own advocate. Neither ignore what they say if you don't like the answer nor take it for gospel without any skepticism.
posted by Justinian at 7:07 PM on September 14, 2007
Best answer: Secondhand anecdote: A good friend was losing energy to the point that even the basics were hard to take care of. She thought it was a worsening of her chronic heart condition, but after a course of antibiotics for an unrelated issue, she perked up immensely, had more energy than she'd had for months. It turned out that she'd been running a low-grade fever due to an undiagnosed infection. So get some more tests, enjoy having the energy, and good luck.
posted by bassjump at 8:14 PM on September 14, 2007
posted by bassjump at 8:14 PM on September 14, 2007
I was going to suggest that you be tested for Lyme as well. The symptoms you describe are what Lyme disease feels like. Of course only your doctor can be sure, but - yes, antibiotics could cause it to improve.
(It's Lyme disease, not "Lymes" or "Lyme's" disease. It's named after the town of Lyme, in CT, where an outbreak brought it to the attention of doctors in the 1970s.)
posted by Miko at 8:42 PM on September 14, 2007
(It's Lyme disease, not "Lymes" or "Lyme's" disease. It's named after the town of Lyme, in CT, where an outbreak brought it to the attention of doctors in the 1970s.)
posted by Miko at 8:42 PM on September 14, 2007
With regards to the fibromyalgia diagnosis:
I disagree--strongly--with the common contention that fibro is still "just" a diagnosis of exclusion. The pressure points test worked (rather sickeningly) well on me (see National Institutes of Health info). Touching those with any force gets a scream and/or vomiting from me.
That said: the other symptoms are diffuse and ambiguous and are common to a zillion things. A chronic infection seems to be a probable source or trigger. Enjoy your health, but I'd give it a while before signing up for any triathlons.
One question, though: did you get put on anything else for the cracked molar? Anti-inflammatories or painkillers?
posted by sarahkeebs at 9:24 PM on September 14, 2007
I disagree--strongly--with the common contention that fibro is still "just" a diagnosis of exclusion. The pressure points test worked (rather sickeningly) well on me (see National Institutes of Health info). Touching those with any force gets a scream and/or vomiting from me.
That said: the other symptoms are diffuse and ambiguous and are common to a zillion things. A chronic infection seems to be a probable source or trigger. Enjoy your health, but I'd give it a while before signing up for any triathlons.
One question, though: did you get put on anything else for the cracked molar? Anti-inflammatories or painkillers?
posted by sarahkeebs at 9:24 PM on September 14, 2007
I was diagnosed with Fibromyalgia some time back. I've done my share of reading on the subject and tried a number of treatments, but I'm no doctor.
Several possibly relevant points:
1. When I ache, it's not in my joints, it's in my muscles. You might want to check some books and message boards to see whether it's common for Fibromyalgia patients to ache in the joints. (I'm kind of embarrassed I don't already know this myself, to be honest. I just never thought too much about the location of the pain. I just knew there was plenty of it to go around).
2. The "almost manic" state and reduced pain you describe sound exactly like the reaction I get from taking magnesium and malic acid combined. This is, according to the alt health crowd, because those substances increase the production of energy on the cellular level. You'll find the mangesium/malic combo recommended by Jacob Teitlebaum, among others.
3. As I'm sure you know, it's not really clear whether Fibromyalgia is actually a different disorder than Chronic Fatigue Syndrome (CFS). And you're probably aware that CFS is sometimes called CFIDS - Chronic fatigue and immune dysfunction syndrome - and is assumed by many, particularly in the alternative health community, to have an immune system component.
4. (I thought seriously about doing a FPP on the following info. If someone else wants to, by my guest.)
A Belgian researcher named Kenny De Meirleir thinks he's found the cause of CFS, which he says involves the immune system. If either he or the alt.healthians are right, it could very well explain your reaction to the antibiotics.
I should point out, though, that De Meilier's theory is not an alternative medicine sort of thing. De Meirlier's work is mainstream, backed up by formal research, and taken seriously by the FDA and the medical community. The drug he recomends - Ampligen (wikipedia link, possibly not up to date) - is either still in phase III trials or has completed them for the treatment of CFS. It's currently available to patients in Belgium and Canada.
His theory of the disorder, as best I can follow, involves an organism that invades and triggers an immune response. The immune response, because of some flawed RNase L, never shuts down. Instead, like a YouTube infused web browser, it just keeps sucking up more and more resources. I seem to remember one claim that as much as seventy percent of the body's ATP (the stored form of mitochondrial energy) was consumed by this process.
Ampligen is thought to correct (or maybe just compensate for) the RNase L problem and thereby boost the effectiveness of the immune system. This, in turn, reduces the drain on the body's energy.
All this might sound promising from where you're sitting, but there may be at least one big fly in the ointment. De Meirleir claims that (a) there's a difference between CFS and Fibromyalgia and that (b) he's devised a lab test which will differentiate one from the other. Basically, they look for the defective RNA. If you have it, you have CFS. If you don't have it but you have CFS-like symptoms, you have Fibromyalgia.
I'm probably getting some of this wrong: I'd need to re-read the materials in question to do a proper job. Anyone who wants to offer corrections, please don't be shy. But I think you get the general idea. De Meirlier is saying that CFS isn't caused by a virus, exactly, but that the invader/immune response process is involved. If he's right, then maybe you got an infection which was inciting your immune system to go into overdrive and suck up all your energy. Maybe when you took the antibiotics, the immune system calmed down again. This would lead to an increase in your energy levels.
Obviously, any doctor with his head screwed on is going to tell you that we don't yet know whether Ampligen is going to work in a significant number of patients out in the real world. And until we know this, we can't draw any conclusions about the underlying theory. Also, all the information I've seen has suggested that this treatment will be administered in injection form and will cost absurd amounts of money.
And even if all those concerns are put to bed, there are some others. De Meileir's handling of his research results has pissed some people off. Here, you can read about the reaction of the NCF (National CFIDS Foundation) to some of De Meiler's actions. I'm not sure I follow every twist and turn, but, basically, it appears that De Meilier chose to pursue financial compensation from the drug companies rather than sharing his reasearch with his cohorts in peer-reviewed journals in a timely manner. Then, he apparently patented the above mentioned blood test - the one that supposedly tells you whether you have CFS - and became part owner in a laboratory, now the only lab in the world that performs this test. I talked all this over with a friend of mine in the medical profession. He agrees that De Meiler's behavior raises some red flags. He figures there are two possibilities: either the guy thought he was sitting on a goldmine and did everything he could to cash in, at the expense of CFS patients everywhere.... or his reasearch is flawed (or worse) and he wanted to avoid real peer-review for as long as possible so that he wouldn't be exposed as a liar.
All that said...
Would I try this drug, given the chance? Probably. But I've been accused of being almost suicidally curious.
posted by Clay201 at 10:51 PM on September 14, 2007 [3 favorites]
Several possibly relevant points:
1. When I ache, it's not in my joints, it's in my muscles. You might want to check some books and message boards to see whether it's common for Fibromyalgia patients to ache in the joints. (I'm kind of embarrassed I don't already know this myself, to be honest. I just never thought too much about the location of the pain. I just knew there was plenty of it to go around).
2. The "almost manic" state and reduced pain you describe sound exactly like the reaction I get from taking magnesium and malic acid combined. This is, according to the alt health crowd, because those substances increase the production of energy on the cellular level. You'll find the mangesium/malic combo recommended by Jacob Teitlebaum, among others.
3. As I'm sure you know, it's not really clear whether Fibromyalgia is actually a different disorder than Chronic Fatigue Syndrome (CFS). And you're probably aware that CFS is sometimes called CFIDS - Chronic fatigue and immune dysfunction syndrome - and is assumed by many, particularly in the alternative health community, to have an immune system component.
4. (I thought seriously about doing a FPP on the following info. If someone else wants to, by my guest.)
A Belgian researcher named Kenny De Meirleir thinks he's found the cause of CFS, which he says involves the immune system. If either he or the alt.healthians are right, it could very well explain your reaction to the antibiotics.
I should point out, though, that De Meilier's theory is not an alternative medicine sort of thing. De Meirlier's work is mainstream, backed up by formal research, and taken seriously by the FDA and the medical community. The drug he recomends - Ampligen (wikipedia link, possibly not up to date) - is either still in phase III trials or has completed them for the treatment of CFS. It's currently available to patients in Belgium and Canada.
His theory of the disorder, as best I can follow, involves an organism that invades and triggers an immune response. The immune response, because of some flawed RNase L, never shuts down. Instead, like a YouTube infused web browser, it just keeps sucking up more and more resources. I seem to remember one claim that as much as seventy percent of the body's ATP (the stored form of mitochondrial energy) was consumed by this process.
Ampligen is thought to correct (or maybe just compensate for) the RNase L problem and thereby boost the effectiveness of the immune system. This, in turn, reduces the drain on the body's energy.
All this might sound promising from where you're sitting, but there may be at least one big fly in the ointment. De Meirleir claims that (a) there's a difference between CFS and Fibromyalgia and that (b) he's devised a lab test which will differentiate one from the other. Basically, they look for the defective RNA. If you have it, you have CFS. If you don't have it but you have CFS-like symptoms, you have Fibromyalgia.
I'm probably getting some of this wrong: I'd need to re-read the materials in question to do a proper job. Anyone who wants to offer corrections, please don't be shy. But I think you get the general idea. De Meirlier is saying that CFS isn't caused by a virus, exactly, but that the invader/immune response process is involved. If he's right, then maybe you got an infection which was inciting your immune system to go into overdrive and suck up all your energy. Maybe when you took the antibiotics, the immune system calmed down again. This would lead to an increase in your energy levels.
Obviously, any doctor with his head screwed on is going to tell you that we don't yet know whether Ampligen is going to work in a significant number of patients out in the real world. And until we know this, we can't draw any conclusions about the underlying theory. Also, all the information I've seen has suggested that this treatment will be administered in injection form and will cost absurd amounts of money.
And even if all those concerns are put to bed, there are some others. De Meileir's handling of his research results has pissed some people off. Here, you can read about the reaction of the NCF (National CFIDS Foundation) to some of De Meiler's actions. I'm not sure I follow every twist and turn, but, basically, it appears that De Meilier chose to pursue financial compensation from the drug companies rather than sharing his reasearch with his cohorts in peer-reviewed journals in a timely manner. Then, he apparently patented the above mentioned blood test - the one that supposedly tells you whether you have CFS - and became part owner in a laboratory, now the only lab in the world that performs this test. I talked all this over with a friend of mine in the medical profession. He agrees that De Meiler's behavior raises some red flags. He figures there are two possibilities: either the guy thought he was sitting on a goldmine and did everything he could to cash in, at the expense of CFS patients everywhere.... or his reasearch is flawed (or worse) and he wanted to avoid real peer-review for as long as possible so that he wouldn't be exposed as a liar.
All that said...
Would I try this drug, given the chance? Probably. But I've been accused of being almost suicidally curious.
posted by Clay201 at 10:51 PM on September 14, 2007 [3 favorites]
Medicine isn't an exact science as we'd like it to be. I realize this anecdote is about my dog, but mammals are mammals...
Several days and $3500 later, my dog's difficulty walking and obvious pain presentation are not diagnosed. Having run out of options (although noting an enlarged spleen, still dunno what's up there and bloodwork shows nothing) the vet elects to put him on steroids and one other med.
Does it help him walk, and obviously reduce his pain? Oh yeah. It also makes him crap in the house, hooray. But it also cleared up his chronic bad breath. He'd had it for years, as long as we could remember, and no vet had ever found a cause for it. Also, he starts running around like a puppy again (he's 12.)
So the course of meds ends, and he goes right back to his pained, stumbling self, including the bad breath. In the follow-up, I mention the breath and the vet is mystified, because she can't think of any reason whatsoever why the meds she prescribed would have such an effect.
He goes back on just steroids this time for a longer course, and once again the pain reduces, walking gets better, etc. -- and his breath gets good again. We have no idea why.
However, if he feels good, that's the key thing, and in your case you feel good -- so this can only be a good discovery, even if the underlying cause is never found. So get thee to a doctor, and smile the whole way. :)
posted by davejay at 10:53 PM on September 14, 2007
Several days and $3500 later, my dog's difficulty walking and obvious pain presentation are not diagnosed. Having run out of options (although noting an enlarged spleen, still dunno what's up there and bloodwork shows nothing) the vet elects to put him on steroids and one other med.
Does it help him walk, and obviously reduce his pain? Oh yeah. It also makes him crap in the house, hooray. But it also cleared up his chronic bad breath. He'd had it for years, as long as we could remember, and no vet had ever found a cause for it. Also, he starts running around like a puppy again (he's 12.)
So the course of meds ends, and he goes right back to his pained, stumbling self, including the bad breath. In the follow-up, I mention the breath and the vet is mystified, because she can't think of any reason whatsoever why the meds she prescribed would have such an effect.
He goes back on just steroids this time for a longer course, and once again the pain reduces, walking gets better, etc. -- and his breath gets good again. We have no idea why.
However, if he feels good, that's the key thing, and in your case you feel good -- so this can only be a good discovery, even if the underlying cause is never found. So get thee to a doctor, and smile the whole way. :)
posted by davejay at 10:53 PM on September 14, 2007
Response by poster: Thanks everyone! Yes, when I first presented my symptoms, my dr. checked me for Lyme, rheumatoid arthritis, lupus; I had a liver study, the usual protocol.
When she suggested fibro, I told her that I prefered to not have that "label"--I was wary of that catch-all diagnosis, as some have mentioned. I was given Celebrex for pain--didn't touch it, nor did Ultram. I was taking alot of ibuprofen, until it started to affect my small intestine, so I eased off on that a bit. It helped the pain, but, of course, did nothing for the fatigue.
No, I was not prescribed any pain meds or anti-inflammatories for the cracked tooth, just the penicillin. So very strange...but yes, I will enjoy this "goodness" and will definitely discuss it with my doctor!
posted by wafaa at 5:13 AM on September 15, 2007
When she suggested fibro, I told her that I prefered to not have that "label"--I was wary of that catch-all diagnosis, as some have mentioned. I was given Celebrex for pain--didn't touch it, nor did Ultram. I was taking alot of ibuprofen, until it started to affect my small intestine, so I eased off on that a bit. It helped the pain, but, of course, did nothing for the fatigue.
No, I was not prescribed any pain meds or anti-inflammatories for the cracked tooth, just the penicillin. So very strange...but yes, I will enjoy this "goodness" and will definitely discuss it with my doctor!
posted by wafaa at 5:13 AM on September 15, 2007
Damnit.
Ampligen (Wikipedia link. May be out of date.)
posted by Clay201 at 5:31 AM on September 15, 2007
Ampligen (Wikipedia link. May be out of date.)
posted by Clay201 at 5:31 AM on September 15, 2007
If you were taking a lot of ibuprofen, it could have been masking some of the symptoms of an infection--I was taking it as a painkiller at some point and it helped me not notice a pretty bad infection for a few days, as it keeps down your temp &c.
posted by that girl at 8:59 AM on September 15, 2007
posted by that girl at 8:59 AM on September 15, 2007
Celebrex and Ultram didn't help the pain, but Ibuprofin did? That seems unusual to me... I have Lupus, and when my symptoms originally presented (major, burning joint pain), Ibuprofin did nothing for me. I remember painfully trudging to the drugstore on my lunch hour and buying some Arthritis Strength Excedrin, and it did zilch.
My joint pain is currently managed by a combination of Plaquenil and Celebrex, and I use Ultram occasionally for very bad flares or Lupus headaches (similar to migraines, I'm told). One other possibility that comes to mind is inflammatory arthritis, which is often successfully treated with antibiotics. In any case, I'm glad you're feeling better!
posted by Oriole Adams at 10:59 AM on September 15, 2007
My joint pain is currently managed by a combination of Plaquenil and Celebrex, and I use Ultram occasionally for very bad flares or Lupus headaches (similar to migraines, I'm told). One other possibility that comes to mind is inflammatory arthritis, which is often successfully treated with antibiotics. In any case, I'm glad you're feeling better!
posted by Oriole Adams at 10:59 AM on September 15, 2007
This thread is closed to new comments.
That said, it's possible that you have a bacterial infection and penicillin is making it better. It's also possible you are depressed and a placebo effect is making it better. Which is which is hard to say; I would venture that the dosage of a prophylactic antibiotic given before a dental procedure isn't exactly superhigh which might lend credence to the latter theory. Or not. It's impossible to say on the internet.
I notice your profile puts you on the border of Wisconsin and Minnesota. That's prime tick country. Do you spend a lot of time outdoors? Go hiking a bunch two years ago? Lyme disease can be hard to diagnose, cause a great deal of fatigue, and joint pain is one of the classic symptoms. And it would improve with antibiotics.
Have you been tested? You probably should be tested.
But don't turn into one of those internet people who decides on their own that they have Lyme disease regardless of what the doctors say. It's not uncommon that people with symptoms of no energy, weakness, and joint point get an idea into their heads and self-diagnose even if doctors tell them they're wrong, and it's kind of sad.
posted by Justinian at 5:50 PM on September 14, 2007