January Update

I don’t want you all to miss out on my exciting life just because I am too ill too write. So, here are the Cliff notes from the last three months:

* An abdominal ultrasound found nothing for the twinge that never goes away. They told me to go to a GI doctor because the ultrasound doesn’t look at the intestines and bowels. I won’t be taking their advice.

* My oral appliance for sleep apnea was incorrectly made for the sixth time. They took impressions again (I’ve lost count now), had it made again, called me last week and cancelled my appointment because something was wrong again and they sent it back to the lab. Again. I’ve gone from disbelieving to irked to irate to laughing to crying and, now, I just don’t give a shit.

* My CPAP machine was still malfunctioning with the whole revving pressure thing, so we swapped it out ~ again. While we were waiting for a new machine, I got three loaners. The first one dumped water all over my face no matter which mask I wore and how little water we put in the chamber. I’d wake up at two in the morning spluttering and coughing from water up my nose. The second loaner’s motor screeched like it was 70 years old and in need of an oil change and I couldn’t get the third one to work properly at all. My permanent replacement is now my third machine (sixth, if you count the loaners) and it seems to be a keeper (albeit still hell to wear a mask).

* I saw an ophthalmologist who said that I am a “glaucoma suspect”. More on that at a later date.

* I had a bad flushing episode while watching the Golden Globes (awards season! My favourite tv time of year!). I can’t remember ever feeling so on fire. I was sitting naked on the couch, red-faced, sweating, ears on fire, nose plugged up, pain in my cheekbone… I’m still trying to figure out what caused it. Lime or leftovers or bacon or all of the above. My husband had to go out and get me Benadryl. I poked a whole in the capsule and dripped about 10mg on my tongue. My god, that’s nasty. If you can tolerate a whopping 25mg of Benadryl, definitely just swallow the capsule. Yeck.

* Then, last night, the first day of my period, I had a bad vasovagal syncopal episode. I hoped these were behind me. I was doing everything right. Lots of fluids, lots of salt, tylenol, in bed, horizontal… But, the minute I got out of bed to scrounge up some food, I went down. This is much different from feeling light-headed because I got up too quickly or feeling dizzy because I simply have low BP. This is diarrhea, shakes, freezing cold, grey pallor, shallow breathing, cold sweats, and very low heart rate and BP.  I thought I was going to lose consciousness and go to the ER, as I have so many times before, but I will fight tooth and nail not to go anywhere near the House of Flu during peak season. Not to mention the fact that I’m scared of IV fluids now that they caused an angiedema /anaphylactoid reaction a few months ago. A ton of salt, electrolytes, and water later, my BP was high enough to register on the monitor (when it’s too low, it won’t register. Gotta get me a better quality monitor) and my heart rate had come up to 60. Again with the biting open of a Benadryl capsule.

I have asked three doctors for help with the mast cell activation tests. I would prefer to have baseline results before I start treating myself with antihistamines and mast cell stabilizers, but they brush off my requests. I research incessantly for help with this problem and, like ME and POTS before it, there seems to be only a handful of knowledgeable doctors in the country and none of them is anywhere near the Pacific Northwest. I can’t help thinking these doctors don’t know what they’re missing. If you knew how amazing this part of the country is, would you really choose to live and practice on the East coast or in North Carolina, Minnesota or Nevada? Really? No offence to all that live in those places! I just watch the weather reports and think quite often, thank god I live here and don’t have to deal with hurricanes/arctic freezes/flooding/20 inches of snow/drought/100+ degree days/tornadoes etc. I like owning one set of clothes.

* My biggest, baddest symptoms at the moment: feeling and looking utterly wasted/half-dead (no invisible illness here!); muscles not working; brain not working; sleep problems; nightmares; eyes blurry; vertigo; shakes; hair loss; headaches; a daily sore throat that feels like perma-strep; feeling overwhelmed. Also, my reactive hypoglycemia and mast cell issues remain a constant threat and, managing them, a constant chore.

* My low-histamine diet attempt (I’ll write more about this in Part 2 of my “Diets” post when/if I’m able to think more clearly) was very difficult and led to more-than-usual blood sugar crashes ~ at different times of day and lower numbers. But I’m still trying to do it, as well as an AIP diet (autoimmune paleo). Oh, I started a Facebook group called, “Low-Histamine + Autoimmune Paleo (AIP) Help.” Please join if you’re another unfortunate with compounded histamine and autoimmune problems!

* I got an Rx for compression stockings, so maybe insurance will cover a decent pair, but have not had the energy to measure my leg or find a medical supply place in the last two months.

* I got a permanent disabled parking permit approved by my GP. I find this really depressing for some reason.

* The Good Doctor ordered the NutrEval test that shows everything about your nutrition and some heavy metals. The test itself was a nightmare. You can’t take any vitamins, supplements or drugs (that are not medically necessary) for four days. That means no sleep help, pain help or poop help. You have to restrict your fluids the day before the test, which, of course, led me to have a blood pressure drop and dizzy weakness in the evening, which led me to drink a bunch of water before bed, which might have altered the test results by diluting my morning urine collection. Then you have to freeze your urine before getting your blood drawn on the same day. The blood draw instructions are convoluted, so I was already skeptical that the phlebotomist would do it properly ~ keep everything frozen and get it in overnight mail. Because, if it’s not your bodily fluids and not your $159 and you don’t know the ordering doctor, why would you be vigilant about the details?

I asked the Good Doc what lab to use for the blood draw. She didn’t know, so she put me in touch with the company rep who told me I could go to any lab ~ “Any lab at all!” I called LabCorp, Dynacare, US Healthworks, NW Hospital, Swedish Hospital and they all said no. I called the rep back. She said AnyLabTestNow.com and Quest labs. I called and they both said no. I called the main 1-800 number for the test company (Genova), they said Pacific Physician’s Labs. All three phone numbers listed were disconnected. Ludicrous! I finally went in person to the lab where I get my thyroid blood drawn and conveniently didn’t mention that this was not my usual doctor from that clinic. They did it, but said they had to courier the samples to their downtown lab and hoped that it would be frozen there and shipped off later in the day. I don’t have faith it made it out of their fridge, honestly. What a nightmare. And this was all done FASTING. Not cool.

* My environmental doctor, Dr. B, ordered a methylation blood test, a mycotoxin urine test and a new Lyme disease test, plus co-infections. The latter tests I can’t afford ($1100+ really?), but I got the results for the first two. Most everything on the methylation test was low (I’ve put the details in my tests page). He told me that I had a MTHFR mutation (what I like to refer to as the “motherfucker mutation”) and my glutathione and all folic acid derivatives were low and I should start taking methylB12 and methylfolate. But I haven’t. Yet.
Also, I got a positive test for something! I tested positive for ongoing mold exposure. Aflatoxin was just on the verge of too high (equivocal), Tricothecene was more than twice the normal range, and Ochratoxin was off the charts high. Unfortunately, if this means moving out of my house and leaving all my possessions behind and living in an aluminum trailer in the dessert, I wish, for once, the test hadn’t been positive. I guess now we need to spend another million dollars getting our home inspected. Although, I have a feeling, just like my ultrasound, MRI and CT scan, that they will find nothing. I probably was exposed years ago or it’s from my overindulgence in oats and nuts or it’s from lying in my garden this summer or we’ll never know. Of course.

* Annnnd….. then my 23andMe came back today… and I don’t have the MTHFR mutation. Dr. B was wrong. I am much more likely than the average person to have rheumatoid arthritis, but I don’t have the mutation that we assumed I had, that my doctor said I had, and that my husband and I have been feverishly researching for the last three months… I know I’m not meant to say it, E., but FML. It was the only treatment for which we had a glimmer of hope. My husband has been cheering me on the last few months: “Hold on! When we get your 23andMe results, we can start a methylation protocol and I really feel this will be the turning point!” Bless him, he is a natural optimist and I just stare at him blankly, try to muster a smile of hope…

Fear not, readers, I am a mutant in other respects and I will hunt down info about the homo/heterozygous SNPs that I do have.

Until next time, I will be shopping the internet for a caravan that is old enough that its interior won’t off-gas noxious fumes, new enough that it isn’t dusty and moldy, big enough that it can house my husband and dogs (in a separate room), modern enough that it can power a large freezer for my low-histamine meals, and comes with an unending fresh water supply, a built-in air filtration system, lots of windows so I can look outside, lots of black-out blinds so I can sleep, has a very comfortable bed, is sound-proof, weather-proof, never gets too hot or too cold, has five million dollars stashed in the floor boards, parked in the dessert, next to a hospital and a Whole Foods, like a pig in a cage on antibiotics…

Now excuse me, I must make haste. The SAG Awards are on and I’m hoping to watch them sitting up, while ingesting food and not collapsing.

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9 thoughts on “January Update

  1. BONNIE JOHNSON says:

    MY GOD GIRL–U WILL SURELY GO DOWN IN THE RECORD BOOKS! I WOULD BE OUT OF MY MIND BY NOW. AT LEAST U CAN STILL END ON A COMICAL NOTE. I WAS GOING TO SUGGEST MOLD BEFORE U CAME TO THAT. IF EVER ANYONE NEEDS TO BE CONSTANTLY DIFFUSING THERAPEUTIC ESSENTIAL OILS DAY & NIGHT, IT IS YOU, MY GIRL!! GOD BLESS U & GIVE U WISDOM & HEALING! MAY I ASK WHERE U R LIVING?

    Liked by 1 person

  2. bertieandme says:

    I keep wanting to look into the gene thing (I had my test done at 23andme last year) but it’s soooo complicated I don’t have the energy or brain power. I love that you call MTHFR the Motherfucker mutation cos that’s what pops into my head every time I see it lol!

    Hope you got to eat dinner without conking out xx

    Liked by 1 person

  3. Keep going Elizabeth you can and will find answers and a way through this. Hang on to your humour, that’s invaluable at getting you through. I hope you got to eat and watch without collapsing. Thinking of you. Xxxxx p.s no need to expend precious energy replying xxx

    Liked by 1 person

  4. Holy crap E. Milo… what a pile of… but I’m loving your strength and your humour. I hope you enjoyed the SAG awards and good luck on the caravan hunt! Wanderly, wanderly wagon!! xx

    Liked by 1 person

  5. I have a lot of histamine stuff too — I take a daily antihistamine and a supplement called HistDao. I probably have a mast-cell problem, too. I have one mutation on the MTHFR gene. My doctor talks too fast, and I’m a bit confused about the whole thing, actually. What is a “glaucoma suspect”? Imagining police poster — “Wanted For Suspected Glaucoma”…

    Liked by 1 person

  6. mom says:

    I don’t even know what the SAG awards are but I had boned up on MTHFR (never noticing how one might pronounce it!) and the methylation protocol. Why couldn’t the mold exposure test be the one that was wrong?
    I hope your wanderly wagon (love that) has a trailer for me.
    Love

    Liked by 1 person

  7. […] 1. Then, the next night, I ate the leftovers and had that bad flushing episode I talked about in my last post. Strike 2. So, no more bacon for me. I’m back on the strict-ish low-histamine train. But, […]

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  8. I realize I commented before when I was very brain-foggy, so as usual I missed the main gist of your post. I also don’t want to sound like I’m getting in your business, since I don’t know you, although I really do love your blog. The one question I wanted to ask was, maybe you could have your enviro dr. test you again for the motherfucker gene mutation (I call it that too). I only say this because, although I have also lost my faith in doctors, I’ve heard mixed things about 23andme’s accuracy. The other thing is that Lyme testing is so bad that you can have a ton of tests before you get a positive…you probably know this already. I’m not sure why it’s so expensive … The tests I had were covered by Medicare. I think IGeneEx takes Medicare.
    Again, not trying to get in your business, because it really sounds like you know what you’re doing, but my heart just goes out to you.
    I’m still very confused by all this stuff and I’m so impressed with your grasp of the science. I actually bought a basic anatomy and physiology textbook just so I can understand my body. (I’m only on chapter 3 because my concentration sucks.)
    Just from reading your blog, I believe in you and I believe that you will find out what the main problem is. There’s got to be that one test (or tests) somewhere that’s off-the-charts crazy and explains everything. Maybe the mold. They put us in a box and label us M.E or fibro or both and wave us away, but kudos to you for not putting up with that shit.
    Sorry for the excessively long comment. I only started blogging in December, and I find that when I read a post that really moves me, I end up leaving a novel in the comments section.

    Liked by 1 person

  9. My bad! I checked and Medicare is the only insurance IGenex takes, otherwise the ridiculous $1100. There are some other labs in this thread that are supposed to be decent (also Stonybrook Labs in NY). http://www.mdjunction.com/forums/lyme-disease-support-forums/medicine-treatments/1396275-which-igenex-lyme-test-is-best-and-costeffective

    Liked by 1 person

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