Cpnhelp.org

I made it this far.  Check your private messages.  (And, no; it's not all in your head.)

Thanks MacKintosh!To be more clear, my first CBC in April showed high (or slightly out of range) neutrophils. I had another a month later pre-surgery, it had high lymphocytes instead. I think. I assume these could be swinging still, but have no way of knowing.It's almost like they don't want to know. Decreases their liability maybe. That's how it feels.Of course I don't know for sure that cpn is responsible for what I'm going through. I just haven't been tested for much at all, and it seems to fit well. The ENT did a culture from the nasal sinuses but I'm sure he was just looking for his usual known bad guys, deciding which antibiotic to give me. At surgery he gave me a week of Keflex as a step down from three weeks of Omnicef and I assume to fend off the OR MRSA. :) I didn't notice any reaction at all to either one.I read through this site many months ago but filed it away in case my doctors failed. I think I'm there. The neuro-ophthalmologist just pronounced my eyes worthy of a jet fighter pilot (evidently didn't understand my complaint) and my doctor apparently won't return my calls after forgetting to even send me to his lab for urinalysis as we discussed, and I was too foggy to notice by 4PM that day. Increase tegretol, says front desk staff. Great, thanks.My grandfather had MS, so if there's a component of familial vulnerability ... who knows.I'm an IT guy, not qualified to diagnose this stuff, I realize this. Hoping to find a doc who's not part of The Machine I'm encountering here, but smart, and not completely fringe -- that's not what I'm looking for. One suggestion so far, a bit of a hike for me (tough when you have vertigo at times) but we shall see.

Hi, I too have tingling areas on the head/neck. Years ago this used to come and go depending on the day--I'd tell my wife, "I have hat head today," meaning it feels like I'm wearing a baseball cap but I'm not. It's just a light feeling of pressure/tingling. But now I have it all the time. Right now it feels as if something is pressing on my left cheek and left ear. That's where it's strongest, although I feel it a bit on the temples, top of skull, and tip of the right ear. It's an odd combination of tingling, pressure and sometimes clamminess. I wish I knew what to call it. Doctors just give me blank looks and don't know what to do with such an odd symptom.For what it's worth, many of my other symptoms are consistent with fibromyalgia, which I was diagnosed with back in 1994.  Without meds I wake up at 4am, wide awake.  My sleep is not restorative.  Without medicated sleep, I get frostbite-like pain in my neck and arms. Brain fog, fatigue, difficulty concentrating.

Hey kerflubble. A hat is an excellent way to describe the sensation, for sure. I may borrow that one. I think it might be best to call it paresthesia? For a while I said "numbness" before realizing the neuro was expecting an actual lack of feeling and was shown the door. I can still feel, dangit, thats not what I meant. It's the associated feelings from a numb limb.My hat gets much lighter every morning but returns every night. Also a lovely nightly tinnitus at 11khz (tuned it on a frequency generator one night for kicks) to go with my disorientation, rather strong at the moment.No ear for me ... yet. Really it feels like the "thing" is just wrapped around my entire head, tonight. Did I mention the occasional, weird prolonged heartbeat? Always together with the other stuff.Fibro appears to me to be a big bucket, and I hope to avoid landing in such a bucket if possible, though it seems TN and Atypical Facial Pain are little better, just catch-alls.Have you been tested for active antibodies to the organism in question here?

I went to see Dr. Powell and learned that, rather than the fibromyalgia diagnosis I've had for 18 years, mercury poisoning from amalgams is a better fit. He recommended I read:Amalgam Illness, diagnosis and treatment, by Andrew CutlerAmong other things I've experienced, that book mentions what sounds like the "hat head" we've been discussing. On page 27, in the "What mercury poisoning does to you" chapter, it says "Victims often experience discomfort that feels like a 'tight band around their head.' They may also experience sharp points of discomfort in their ear canals at bedtime."FWIW, dizziness, asthma, and GI symptoms are mentioned as well in that chapter. The list of symptoms is long though, because the effects on people are so varied and wide-ranging. Since it affects your immune system, it makes it easier for CPN and other pathogens to take over.In the past I had looked into mercury and gotten the standard answer, "Mercury in amalgams is stable, it's more dangerous to take it out than to leave it in, etc." Now I'm learning that even old mercury fillings emit a stream of vapor.  See the "smoking tooth" video:http://www.youtube.com/watch?v=9ylnQ-T7oiAAnother book Dr. Powell suggested was "It's all in your Head", by Hal Huggins, a dentist who was once an "Amalgams are safe" guy who changed his tune when he saw dramatic improvements in people after amalgams were removed.Note that special precautions (rubber dam, separate oxygen, air filters, etc.) need to be taken when removing amalgams, since you are dealing with a hazardous material. There are organizations such as IAOMT that teach proper removal. I wouldn't want someone who reads this to make their situation worse by having their fillings removed by someone who didn't take such precautions.

One other weird observation! As I said I've I've had the two MRI's, nothing jumped out at them. One was last year when I was just looking in to the disequilibrium thing. Before the nerves started acting up.The thing is, with the second one a few months ago, I asked to go in at night, when symptomatic. And ... I could distinctly *feel* the damn field this time. As in, I could tell you what plane they were doing, and where it was much of the time. For a short time it was interesting, but after the novelty wore off it was just disturbing. Was worst through the eyes, and bridge of the nose. This is not unheard of, but not common either. On several of the series it gave me a pretty good jolt. You can see it on the images, the scan lines through my eyes are blurred in some of them, where I was kind of involuntarily reacting.As far as I know there's no clinical significance to this (some aspects are understood, others no) but it's curious. Same series, same machines, very different reaction. For some reason that night my eyes were reacting to the magnetic field by producing some current. Normal circulatory loops generating current? Enhanced blood conductivity these days? Dunno.

> How was mercury diagnosed? I would advise healthy skepticism. This is one of those areas it seems an MD can become a bit overfocused, and where I've often seen some ... oversimplification of the science.Mercury hasn't been diagnosed, it's been suggested I research it and get tested (hair and urine) for it. Dr. Powell said the tests are not great, but they still can be useful. I'm also being tested for a variety of pathogens, where once again I gather from this site that the tests are not reliable. I also had a panorex done so that Dr. Powell can look at it for sinus and/or wisdom teeth site infections. He's going to send that out for a second opinion. My strong reaction to Doxycycline awhile back makes me wonder whether I'm fighting something bacterial, perhaps something that got the upper hand because of an immune system weakened by mercury.> I would advise healthy skepticism.I've been skeptical of amalgams for 18 years. A friend with chronic fatigue had them taken out in 1994 and I thought she was being silly. But the more I read about it, it's pretty nasty stuff, and the tide appears to be turning. It is now banned by a number of countries. Granted, as I look into this it's hard to fight selection bias and confirmation bias. And the list of possible symptoms is huge. But so far I agree with Dr. Powell that the list fits me better than the fibromyalgia list, which is of course also long.> What we're describing is certainly a paresthesia. I'm surprised your doc is resistant to describing it as such. That is ridiculous. What would they prefer to call it? Sensory hallucination? Lying? I guess they don't like to put labels on things prematurely, though it hardly seems a leap.What doc? Powell? There was no resistance. I described several symptoms as paresthesia in my written summary, and the word never came up in discussion one way or another.

Others here respect Powell, but I've heard of too much of this sort of flakiness from him to really do so.  That list of "mercury poisoning" symptoms that he referred you to isn't a list of things that really have been proven to occur from mercury poisoning -- that's a different list, which you can find on Wikipedia:http://en.wikipedia.org/wiki/Mercury_poisoningInstead, the list he directed you to is a list of symptoms which are hypothesized to come from mercury poisoning.  Now, there's nothing inherently wrong with hypothesizing that there may be a subtle form of mercury poisoning that has fallen beneath the radar of conventional medicine.   But to take that uncertain list of symptoms and do pattern-matching on it is too much.Not that there's anything wrong with getting tested for mercury, so long as you don't fall for the common trick of testing mercury levels after "provocation" with a chelator, and then comparing them to normal unprovoked levels.  Or for the trick, when hair tests come back low, of saying that this is because you are a "poor excretor" and thus are especially in need of treatment.Anyway, the nice thing about a flaky, er, open-minded doctor is that you can gently steer him in the direction you want.

Guys, I'm sorry to offend. I know nothing of Dr. Powell. I am surprised at the hostility, I did not intend to be controversial. This is the same advice I would give a friend.I am just a skeptic by nature. It's not that I discount metal toxicity entirely. Mr. Yarvin sums up my beliefs better than I ever could have, I don't think I could be so lucid on the subject. Appreciate your input for sure.When I say "docs" you can safely assume I refer to my own personal experience, even if I happen to be ranting about them in general at the time.You mentioned that no doctor had called it paresthesia in the post prior, that's all I was referring to. "They" don't use this word (in my estimation) because of its common association with certain rather specific diagnoses. This is a source of frustration for me, regular talk and presumption of "headache" basically based almost entirely on negative MRI. That's all. You all make a very good point about having an open-minded doctor. I wish I had one that would consider mercury.Passed a little rice-sized bright red blood clot in urine after trying four ibuprofen the other day. Scared the crap out of me, though I guess it's not unheard of. That's new for me, though it could also be a red herring. No pun intended. I really think some kind of workup is justified, after the kidney stone, or all the colon polyps, maybe the bleeding intestine, jazz hands, or just my word that my cranial nerves are misfiring like hell all of a sudden. Don't have one to call at all right now.I have seen maybe a dozen in the last year. I'm sure there are good ones. Every one I've seen has been disinterested and disbelieving. It's awful. That's all.