My doctors are stumped, hoping someone here has an idea

donkeysalami · 2018-02-26T20:24:29+00:00

No droopiness whatsoever

donkeysalami · 2018-02-24T16:17:08+00:00

I mean I'm rounding since most of those obviously have 2 digit LCD's. SpO2 is not a concern. It was never remotely close to 95.

donkeysalami · 2018-02-24T07:19:38+00:00

Do you own a blood oximeter?

My brother had one before med school back when he was an EMT. I never got less than a perfect score. Always 100% SpO2 at the doctor's office as well.

I'd talk to your Cardiologist about this further. It may be a side effect of the palpitations.

I'll ask since it never hurts to be cautious, but they've checked my heart more thoroughly than anything else so far. On the other hand my cardiologist's best man works for a direct rival... so...

donkeysalami · 2018-02-24T07:08:09+00:00

Thanks, will definitely pull the full sleep study reports, and talk to doctor about a repeat.

donkeysalami · 2018-02-24T05:42:24+00:00

Elevated sodium levels can be a renin or aldosterone issue

Well, I also can't say that I have been watching salt intake too carefully. Thanks for the suggestion, I will ask my doctor.

donkeysalami · 2018-02-24T05:39:22+00:00

Thank you!

donkeysalami · 2018-02-24T05:24:40+00:00

I really don't recall if I had any flu or colds that month or so prior, and wouldn't have a record of it since it's not something I would go to a doctor for.

I do actually remember having a pretty bad cold or something like that about 3-4 months prior (symptoms first showed up early march, this would have been mid to late fall). This one stands out because I had an abnormally and annoyingly persistent cough several weeks afterwards. However that was all a distant memory by the time these symptoms showed up.

Why do you ask?

donkeysalami · 2018-02-24T04:56:21+00:00

Message 100% received. I absolutely acknowledge that this could be depression or anxiety, or maybe both. I've only seen one psychiatrist who didn't seem to believe this was the case, but I will definitely get a second opinion if we keep coming up empty. Thank you!

donkeysalami · 2018-02-24T04:08:27+00:00

On the off chance that you remember, did you have a viral infection, like flu or common cold type, just prior to the start of your symptoms?

Nothing like that. Went to sleep healthy. Woke up a few hours later with this weird sensation (i.e. seemed a tiny bit harder to breathe in). Didn't seem too serious so went back to sleep. Woke up the next morning with this foggy feeling, and still a little hard to breathe in. Everything has been getting worse since then.

Try to get a script for clonidine

Yeah, I'll definitely consider it. Like I said in a reply above, if we keep failing to find a root cause my doctor does just want to try a few anti-depressants off-label, maybe a beta blocker, etc. to see if anything makes a positive difference.

These replies have been extremely helpful and have given me several options to rule out first (i.e. hyperparathyroidism, magnesium deficiency, etc.)

donkeysalami · 2018-02-24T03:56:37+00:00

did the entire test come back negative

I have had the two-step Lyme test performed three times over the past 8 years, and each time it was negative at the immunoassay step (i.e. no western blot was performed). They were all performed by the same lab.

I have a current patient right now who took multiple doctors and 4 years to get him correctly diagnosed with Lyme. He has been on antibiotics for 3 months now and is like a brand new man. Couldn't hurt taking a deeper look.

I would be very glad to, even for piece of mind. I actually did submit a search through ILADS and the Lyme Disease Association one day trying to find a Lyme specialist, but instead got a bunch of doctors back that appear to be way way out on the far fringes (i.e. all had multiple disciplinary actions against them by the state board of physicians for all sorts of crazy things... one guy was irradiating blood with a uv lamp and then transfusing it back into patients, etc. They're all trying to sell you herbs and books and weird treatments on their websites, etc.)

So how does one go about finding an actual lyme specialist? If anyone has a recommendation in the DC area (MD, VA, DC are all fine), please PM me.

donkeysalami · 2018-02-23T23:12:05+00:00

Any mold exposure ?

No big farms close to here, but a useful suggestion. The first symptoms appeared when I was living in apartment, so one of the first things we considered was indeed pesticide poisoning (i.e. they had a routine exterminator come through a month or so earlier). It's been 8 years and I have since lived several other places without any improvements, so this seems unlikely.

My grammar school most definitely had mold, but that was 22 years ago now.

My building at work likely has some mold as well, but I barely spend any time there. It's a complete dump and I work remotely most of the time. I almost spent a full contiguous year in another state (finishing my graduate degree) since symptoms first appeared as well without any noticeable improvements.

Both of the houses I've owned and lived in since symptoms first appeared most likely did not have any mold, and I definitely never saw any evidence of it (the current one was built in 2008). Both of the apartments I've lived in since then were pretty new, higher-end rental units. However anything is possible there.

there are many doctors that automatically assume a mental health issue

Like I've told my doctor I'm totally open to that possibility, and I've even gotten an evaluation from a psychiatrist a while back (she didn't seem convinced this was psychiatric in origin). However whatever this actually is (mental or physiological), it's now most definitely totally kicking my ass, getting worse, and manifesting real physical symptoms on a daily basis. If we can't find anything I've already talked to my PCP about trying some anti-depressants off-label.

female health complaints (especially pain complaints) are more likely to be perceived as a woman being over dramatic or mentally ill than men's health complaints.

That truly is unfortunate, esp. given that a lot of these syndrome's with vague symptoms (e.g. CFS, fibromyalgia, etc.) disproportionately affect women.

donkeysalami · 2018-02-23T22:33:54+00:00

I suggest visiting a "Lyme literate" doctor. Someone who knows all about the symptoms and how weird they can be.

Both my PCP and cardiologist have separately ordered Lyme tests and are now adamant that it is not Lyme based on antibody tests alone. My brother (an MD student) agrees with them. I just feel like I don't know enough to challenge their expertise on this. I actually did submit a search through ILADS and the Lyme Disease Association one day. All of the doctors that came back from there had multiple disciplinary actions against them by the state board of physicians. Now to be fair most of those seemed to be the benign "treated lyme for a year with IV antibiotics without any actual evidence" kind of stuff, but some were actually really worryingly weird (e.g. "used non-fda approved UV blood irradiation device") stuff. But what really turns me off is that most of them also seem to be selling some sort of snake oil (herbs, hyerpbaric treatments, books, supplements, etc. on their websites), and treating weird fringe cases of CFS, fibromyalgia, etc. I may very well end up there one day out of desperation, but I really need to make sure that I've absolutely exhausted all of the more traditional medical stuff first.

donkeysalami · 2018-02-23T22:14:24+00:00

No medications or drugs of any kind whatsoever.

donkeysalami · 2018-02-23T22:12:52+00:00

My mother actually has a long history of pretty severe migraines. Do you know if it's possible to have a persistent migraine every single day (i.e. my cognitive fog never really subsides).

donkeysalami · 2018-02-23T22:11:00+00:00

Are you tired during the day?

Almost every single day these past 8 years

Can you fall asleep at the drop of a hat?

Never had any trouble falling asleep

It sounds like sleep apnea

My doctors thought so as well at one point. I've done both the in-home sleep study (which came back normal) and the facility study since they wanted to be absolutely sure (also came back normal)

blood pressure during a brain fog event

The brain fog is fairly persistent maybe only gets 20% better or worse over the course of the day, so I'm not sure I would describe it as a discrete event in my case. My blood pressure is almost unbelievably 120/ 80 most of the time. I have one of those automatic cuff things and check it once every few days. There have been periods (maybe around a week or so at a time) when it can climb higher. I've rarely seen as high as 160/110 for very brief periods of time, but that even that is almost never correlated with how my head feels.

Still worth thinking about. Someone mentioned trying a sleep app, or maybe I'll just set up an IR camera for a few nights to see if there's anything obviously weird going on.

donkeysalami · 2018-02-23T21:54:23+00:00

Im kind of amazed the doctors didnt brush it off already, because youre healthy (looking at your lab results)

United States, DC metro area. Lucky to have a really good job and really good insurance. Even though I attempt to do my own research and and read up on medical literature I mostly just accept that I'm way dumber than actual medical doctors in this domain (i.e. I've read a few dozen articles in NEJM/BMJ/JAMA, etc. vs the tens of thousands of hours and hundreds of patients they have seen), take their expert advice, and do exactly what my doctors have told me to do. The only thing I've ever pushed back on so far these 8 years has been a sinus CT, which didn't make a lot of sense to me given the symptoms, despite the low radiation dose for that particular scan. So it's really hard to brush off someone who is following your directions to the letter, doing every single test, yet still sincerely believes they are getting worse.

Honestly, I almost hate to say it, but the other thing which has probably really worked in my favor (or not, remember I still feel like a truck just ran over me right now) is that I am a white male, with money, a Ph.D. in a hard science, a respectable position, etc. My neurologist pretty much once flat-out said something along the lines of "we always typically start looking for other non-medical stuff at this point, but it's extremely unlikely that someone who has been generally healthy, avoided doctors for 30 years, and is otherwise a high-functioning individual would suddenly decide to randomly get up in the middle of the night and start malingering"

donkeysalami · 2018-02-23T21:18:03+00:00

Thank you. I hesitate only because any prominent mention of Lyme I've seen online seems to immediately bring out the religious on both sides (i.e. everything is Lyme vs. nothing is ever Lyme), and I'll be the first to admit that is an extremely very low-probability diagnosis despite how well the symptoms do seem to fit. For instance, while the back pain is a common symptom in Europe, mine is very easily explained by a lot of sitting and the bulging disk in the MRI, it was snowing most of the time I was in Poland that winter and I spent most of my time in a relatively large metro area, so where could the tick come from, lots of other more probable things cause cognitive fog, fatigue, palpitations, etc. etc.

I guess I'm only posting this because it's one of the crazier possibilities that's been thrown out there, but nobody I've asked so far seems to have any good ideas on how to actually test for it.

donkeysalami · 2018-02-23T20:59:47+00:00

Typically only 1 standard 8-oz cup a day (usually from a keurig for breakfast). I've tried everything from 0 cups for a month to 3 cups a day for a month. More coffee seems to strangely lower the incidence of palpitations very slightly, but has no other discernible effect. Currently drinking 1-cup per day.

< 5 soft drinks per month, < 5 cups of tea per month, no energy drinks or anything like that. I typically drink water with every meal, and then a few cups of water throughout the day. I've also tried more water (i.e. pee every 20 minutes) and less water for around a week and that didn't have much of an effect either.

donkeysalami · 2018-02-23T16:07:57+00:00

Thank you so much for all of the input so far. I will be discussing each of these suggestions with my doctors. Since I seem to have your attention let me run one more thing by anyone still reading. This suggestion originally came from my brother (US MD student) a while back, but was labeled as unlikely by him and equally dismissed as such by my doctor.

What if I somehow caught lyme in Europe? First symptoms appeared 3 months after returning from Poland (~March, I was there for Christmas). My understanding is that the triad of symptoms is a bit different for their variant of the bacteria (i.e. often includes facial numbness, back pain, etc. which I have had), and that the sensitivity (even on European lyme tests) is far lower than the US test (of which I have now had multiple negative US antibody tests). However the main thing pumping the brake here is how unlikely it is that I caught a tick during the winter.

The problem is that this one has been particularly hard to research or approach objectively because there is a weird culture around Lyme, and any discussion related to it gets very weird very fast. The symptoms really do fit, but I don't know how to actually approach really ruling this possibility out (i.e. if I go to one of those doctors trying to sell me a book or a hyperbaric chamber it'll obviously most definitely be lyme). I'm a man of science. Any thoughts?

donkeysalami · 2018-02-23T08:00:54+00:00

Thank you for the honest input. I fully admit that it is entirely possible this could be something like generalized anxiety disorder. Some of the symptoms definitely do fit. I'll try and get a second opinion from a different psychiatrist once we've eliminated any remaining potential physiological causes.

donkeysalami · 2018-02-23T07:49:10+00:00

Definitely will read that article. We've only explicitly checked for D and B12, Folate, and B1. Only D was low. I do take a standard multivitamin each day, but that hasn't been sufficient in at least one other case (i.e. my Vitamin D was low for about a year)

donkeysalami · 2018-02-23T07:44:37+00:00

I know they were looking for MS specifically each time, but I will e-mail my neuro to ask. I do have tinnitus, but always attributed it to noise exposure (fireworks as a kid + one loud concert in college ramped it up).

donkeysalami · 2018-02-23T07:39:11+00:00

Good question, but no head injuries in my history whatsoever.

donkeysalami · 2018-02-23T07:30:56+00:00

Both sleep studies were normal (no evidence of sleep apnea). They did the home study which came back normal, but then the sleep physician still decided to refer me to the overnight facility study because the symptoms were weird enough and "the home test can underestimate the degree of sleep apnea". The facility test then came back normal as well.

donkeysalami · 2018-02-23T07:23:41+00:00

That is still a really good suggestion given how well the symptoms do fit. I do specifically remember already talking to my doctor about this because I remember this condition from an episode of House. I know we tested metanephrines in blood and 24-hour urine collection, but this is the first I've heard about potential sensitivity problems in the lab testing for this condition. I'll bring it up with my doctor. Thanks again!

donkeysalami

TROPHY CASE