Hello, my story, doctors in Ohio, anyone?

Hi all, glad for any advice you can reply with, or PM me. I'm in the Columbus area but willing to travel if appropriate. A brief summary - I could go on for days (I think maybe I do...)

I'm a 40 year old guy in pretty good shape, all things considered. I've talked to MANY doctors about all of this, and am getting VERY frustrated with the attitudes I'm facing. Mostly I'm offered pain meds and other symptom relievers which accomplish neither, really. Seriously, my GP has ended our last two visits with "are there any pain meds you'd like to try?" Well I don't know man, you're the doctor here.

I have mostly refused, though I'm trying tegretol now. I don't think I can do my job on this stuff. None of them work anyway, seems like this one included. It dulls it a bit. I feel I am deserving of some further testing. I've been seeing this doctor for maybe 15 years, and have never been a big consumer of his services.

I'm not bleeding and am fairly coherent and so am dismissed as neurotic/anxiety/stressed, who knows.

Quick symptoms?

* Nightly "brain fog" and (what I'll call) paraesthesia. It began as a tingling in my right eyebrow last fall. It has since then spread "in to" the eye, up the forehead, and back along my scalp. It is not a *headache* as several doctors like to call it, but a maddening sensation of ... tingling ... a rubber band around the area ... a feeling of significant swelling as well. Except that none of it is physically visible. I've had many "headaches" before in my life, and whatever this is, it ain't that. At this point I'm very fatigued and am disoriented every night as well. It is alarming!!

Pain relievers do very little for it. It's like I have a bowling ball strapped to my head with a somewhat knobby rubber band that just happens to not exist. Not especially painful. I just want to take it off once in a while, that's all.

* Vertigo that hit me in my early twenties, really curtailing my driving. This seemed to disappear for many years, but returned with a vengeance about five years ago. Some afternoons I feel close to a fall when getting up and walking, say, to my car. I have avoided driving my kids on vacations for many years now. It comes and goes randomly, but is guaranteed to make an appearance before long on any highway, and then does not abate. There is no history of trauma here, no associated anxieties ... tried the psych route several times, no help.

* Asthma diagnosed around that same time (in 20's), when it very briefly landed me in the hospital. It has not really attacked like this since my twenties (or maybe I take better care of myself,) though I've asked for albuterol to have through a couple of worrisome chest colds. Once you've felt asthma you're very inclined to avoid it in the future.

* An array of mild-moderate GI symptoms, ongoing since about that same mid-twenties timeframe. Your basic IBS-type stuff. Oh, and an apparent kidney stone a few weeks ago, hematuria and everything ... never did see a kidney stone, or any follow up from my GP despite asking. Unrelated, I don't know.

I've seen the GP, a neurologist, ENT, ophthalmologist, and a neuro-opthalmologist on quite a few occasions. Two MRI's with contrast, a sinus CT. I agreed to let the ENT perform FESS/septoplasty this June, though I didn't really have any sinus issues. Well, now I do, and they didn't find anything. Normal flora. But hey, you could drive a train through there now. Some minor supratentorial focal lesions (a little larger than grains of rice perhaps, if I know what he's talking about?) that haven't changed over the last year.

So I've had all these wonderful profitable imaging studies, but only a couple of CBC's and a blood panel. Both showed slightly elevated white counts (12-ish?) with fluctuating neutrophils and then a right shift a month later. No one is interested in following up on those. No interest in a CBC post-FESS and a month of Omnicef even.

I feel stuck in a rather broken diagnostic/surgery profit machine.

To my uneducated eye, I'm not inconsistent with any number of things at this point, up to and including MS, Lyme, or even some far less complex disorders. I have endured nights and months of torture, lost many weeks with my children, waiting for appointments 2 months in advance only to be poked in the forehead and told I'm super-fine. No big tumors or abcesses on the images, see ya. They have "eyeballed" me as Trigeminal Neuralgia, Atypical Face Pain, headache, done, everything else ruled out, see you later??? I just don't understand it.

What I really do NOT want is for this to have to deteriorate further to get on a clinicians radar. The next step cannot be good, I have a feeling. What to do?

I'm in the market for a new doctor anyway, as you may have guessed. Thanks for listening if you made it this far.

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

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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 first saw the term "paresthesia" on this site a few months ago and was hopeful to finally have a name for my symptoms, but I've not had a doctor confirm that it's the correct term for what I'm experiencing.

I too have tinnitus.  It is constant, but the volume changes.  I haven't correllated the volume changes to anything.

I also have PVC's and PAC's (feels like my heart skipped a beat, then recovers with an emphatic beat).  I notice those most late at night when I'm lying in bed, but of course that's when it's *easiest* to notice them.  They seem to have lessened lately. I've been tinkering with supplements, diet and exercise. The thoroughly researched "Perfect Health Diet" book and blog have done wonders for me, as far as losing weight, dropping blood pressure, and keeping energy steady. The blog and the author's experience with CPN are what led me to cpnhelp.org.

I have not found the fibro bucket terribly helpful. It draws scorn from some docs and physical therapists, who don't believe in it ("garbage bucket diagnosis"). The docs who do believe in it have only been able to help with sleep meds. (Actually the latest sleep drug comes from a neurologist who did a sleep study and found I had Alpha-Delta sleep anomaly. When my brain tries to go into deep delta sleep, it pops back up into alpha level.)

Back in 1994 I was thrilled with the fibromyalgia diagnosis, "Cool, something non-fatal!" because some of the other things they were testing me for would mean death within a few years.  I'm less thrilled with it now. Fibro docs are eager to address my symptoms, especially the pain. They want me to heat my muscles, stretch, use a Theracane to loosen knots, and use an AlphaStim (sends a small electric current from a 9V battery, just a tingle compared to a TENS unit) to loosen knots.  The problem is that as long as I'm on sleep meds (1mg klonopin, after having tried elavil, flexeril, soma, trazadone, diphenhydramine), I don't have pain.  I do have lots of tight muscles and cramping. Theoretically the Theracane and AlphaStim would help with that but in practice no. Massage helps for a day or two.

I have not been tested for antibodies yet. I did the NAC test referred to on this site, but did not get the congestion that would indicate NAC killing CPN. In 2008 though I was given Doxycycline for a couple of weeks and felt the sickest I've ever been--chills, night sweats, nausea. In retrospect perhaps that was my body dealing with die off of CPN, or some other bacteria.

I look fit/healthy, and am able to keep a full time job. My blood tests come out normal, so it's hard to get my GP too excited about say investigating thyroid issues. So I have turned to using mymedlab.com to do blood tests out of my own pocket, to satisfy my curiousity. I'm not sure what to make of the "Stop the Thyroid Madness" site, but I have taken the tests they recommend. I have a low body temperature (temp upon awakening averages 96.2, and never reaches 98.6 during the day unless I do a 30 min sauna at 120-130F). My TSH is around 4 or 5, whereas some folks think getting it closer to 1 would be better. My ratio of free T3 to reverse T3 is 8, whereas it should be > 20 according to that site. So by their standards I'm hypothyroid. I do have cold hands and cold feet, along with occasional Reynaud's syndrome. 

I have not found a doctor near Minneapolis that deals with cases like this from a chronic infection perspective, so I am going to see Dr. Powell in Sacramento, CA in August.

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 Cutler

Among 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:


Another 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.

Kerflubble, hey there. I went on vacation with the fam not long after posting last, and then was generally distracted. Glad to hear you've got a lead on your hat. 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. With leaps of logic. To my eye.

Having amalgam fillings removed may very well be worth it. I don't have any myself, lucked out as far as teeth when I was young enough for amalgam.

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. The more I learn about medicine the more impressed I am with GP's for doing what they do daily. And the more disappointed I am to realize exactly how I'm falling through the cracks. We are the 0.1%. Why spend hours or days trying to diagnose me when they could help 20 others? They know well based on past experience, my presentation and the lack of tangible signs that they likely can't help me. It just happens to suck to be me (or you.) Could always be worse, right?

I'm told there's a worsening doctor shortage. I'm trying to take the seeming neglect less personally these days. Not there yet.

Whatever I (and by I, I'll mean possibly you as well) have is "atypical" at best. Possibly even unknown completely. Within the "atypical" category even, the possibilities are staggering. Some days I am convinced it's autoimmune. Other days I wonder about this or that virus, bacteria. Or maybe I was exposed to a chemical, I was doing a ton of remodeling before it hit. Lead paint? Freaky parasites? Maybe genetic.

I could guess a different thing every day until I die and never run out of variations on conditions that aren't inconsistent with the miniscule amount of data I have so far.

People get paresthesias, and then they will have a high fever, find an abcess somewhere, or tumor, be the age of 99, or have a green stalk growing out of the head, which can aid in diagnosis. None of that? Come back when you have a REAL illness.

I made an appointment with a potential new PCP, a DO. A NP at Walgreens (there for one of the kids) advised that on average they may be more open-minded than an MD. I sent in the records release forms he needed, he said about two weeks, but I'm not sure he's having me back. It's been a month. What else can you do but accept your new normal; torture every night. I haven't talked myself in to an ER visit yet. What would I say?

Some new observations:

* Some days pretty noticeable orthostatic hypo/hypertension. As in, I stand up, and something starts throbbing, or I get dizzy. Always, and only, when I'm feeling like crap.

* Going from one indoors to outdoors often aggravates it (on the other hand, walking around in the sun all day in Florida apparently not a problem.)

* Being distracted helps a bit, so as long as I never read books, stay in a quiet place, also never stop talking or moving again I'll be a little better.

* When at its worst its like I'm a little bit ... delirious. Everything speeds up ... my reaction times are crap, my speech is slurred (people are saying "what?" to me a LOT these days) I bump in to things ... Calm enough, and sort of dream-like. Sometimes I write crazy, rambling forum posts in hopes of figuring out what the hell is happening to me.

* Double vision on looking to my side at more distant (6+ feet) objects.

* My hands are starting to tingle in the evening, like my eyebrow started a year ago. Kinda like I hit my "funny bone" a little. Except in my hands.

* A very pronounced sour/metallic taste coming from my upper right jaw. My suspicion is an inflamed parotid. This suggestion was (not entirely unanticipated) met with chuckles from the DO. Maybe it IS a unilateral taste hallucination of some kind, I have to consider all the possibilities I guess. By what mechanism one detects a false flavor when the tongue is angled 45 degrees to the other side of the mouth (pretty sure they're still the same nerves when I move my tongue) escapes me. Whatever.

* Cold packs are still my best friend. I have four I rotate.

* Starting earlier in the day, these days. Sometimes 2-3PM. Interfering with work a bit.

My second worst fear, after this staying the same the rest of my life, is that I'm going to have to have a stroke, kidney failure, bulging metastatic tumors, or some other Really Bad Thing before anyone takes me seriously.

What I DO know is that the sensations began in a cranial nerve or two. CN5, V1. It is the same dermatome affected in supra-orbital neuralgia. Except I don't have the spikes of pain. And mine lasts all night, every night. And it is at least somewhat bilateral these days.

I believe those nerves are myelinated. What would slowly demyelinate (or otherwise interfere with) parts of one or two nerves in such a localized fashion? "Mutant" Zoster, or HSV-1? The localization in my head seems a strike against something like an electrolyte imbalance, no?

I have a job and family to support. Unfortunately the finer points of neurology, rheumatology, endocrinology, and all the other specialized knowledge out there have proven to be a bit too complicated to master in my spare time.

mk - I'm going to gently suggest you slow down a bit.  The doctor kerflubble saw is one of the foremost pioneering doctors in the country, regarding our mystery diseases and he gives each patient quite a lot of his time and energy.  Just because he came up with a surprise diagnosis doesn't mean he being difficult. He is neither overfocused, nor does he oversimplify; he is open to a variety of possibilities and he tailors his treatment protocols to the individual's needs.   

We have all had bad doctor-experiences, but please don't paint every doctor with the same brush. Thanks.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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:


Instead, 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.

Or, you could put it another way.  He is open to paths and thought processes to which others have closed their minds.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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.

mkanders,  No hostility here.  We're a pretty low key, straightforward bunch and  we generally mean  what we say, no more, no less.  (No need to read more into it.)  Wink  I can understand feeling a bit sensitive, though; it sure sounds like you've been through the wringer, of late.  I've had one kidney stone, over twenty years ago, and I still cringe at the thought of that pain. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi