Happy Holidays!! End-of-2019 Update

Good evening readers!
It’s been another while since my last post… but there hasn’t been too much to report. Haven’t been up to much except work and hiking on the weekends…. and a little running here and there. Well, that was until I started writing and thinking about all the things that have happened since my last post in August.

Finishing the Empire State 10k run back in mid-October.

So, earlier this fall, I was put in touch with a couple of people who had been up to a medical practice in Canada because they weren’t able to get adequate diagnoses of their conditions here in the US. They described their experiences to me and so I decided to make an appointment.

My appointment was originally scheduled for January 28th; however, the doctor I was going to see was going to take a leave-of-absence and so they wanted to reschedule. I had my initial appointment with them this past Monday, December 16, 2019, in Richmond Hill, Ontario which is a little west of Toronto.

I drove up Sunday with a stop at the Rochester REI to have them help fit my new Osprey Ariel 75L pack and get it ready for some hiking trips. Stayed at a schmancy Hilton hotel which was one of the only hotels relatively reasonably priced and not too far from the practice in Richmond Hill.

I had reached out to a friend I met while on my two-week vacation in Australia in 2016. She lives in Toronto and so I figured I would see if she wanted to meet for coffee or dinner to catch up. It was really nice to see her!

Monday morning came and went. My appointment was scheduled for 12:00 (or 12:15pm – I swear the receptionist said 12) and since I had to check out of the hotel at 11, I figured I’d just go and arrive at the practice early and have them collect my samples (blood, urine, saliva, and drinking water which I brought from my home tap, home filtered, work tap, and work filtered). My appointment wasn’t until 12:45 and I arrived at 11:30. Oh well. Better early than late. This is not your average medical practice. It’s a practice that provides more naturopathic, functional medical testing and treatments. More specifically, this practice uses dark field microscopy to observe live samples of a patients blood. It was a beautifully built, clean, quiet building with plenty of big windows, natural light, and air.

I was a little delayed in seeing the doctor and so I wasn’t able to get the blood sample drawn that was going to be sent to a clinical laboratory in Germany.

Let me back up a little and tell you why I’m planning to have a blood sample drawn and shipped to Germany.

My optic neuritis; I haven’t had as many doctors appointments between September and now than I did between mid-November of last year and end of August this year (end of my insurance period). I have a high deductable insurance plan through my work (which I am absolutely greatful for!) and the hospitalizations last year blew through that pretty fast. Now that my insurance period has renewed, I start at square $0 on that deductable and I have no desire to try to cover that again if I don’t have to.

My neural ophthalmologist wanted to get a new MRI and so I said it had to be done before the end of August – thankfully it got done. I had it done shortly after the Ragnar Relay in Vermont. It again revealed two small lesions. I sent a copy of the MRI disk to my ophthalmologist in Schenectady, NY and a copy to the ophthalmologist I saw at Wills Eye Hospital so that he also had the latest info. I doubt he’s looked at it. I haven’t heard from him in months; I doubt he’s still thinking about my case. The big “report” that folks said he generated for patients took a long time to arrive and I only got it after submitting a records request even though I called his office two or more times specifically saying that I hadn’t received any patient report and that I would like to have a copy. “Ok, we’ll send out a copy.” I ended up going the official route and submitting a records request. I wasn’t terribly impressed by the report I received – basically repeating what I knew already –> “We don’t know.”

It was also a ton of fun chasing down my fluorescein angiography imaging from MidAtlantic Retina at Wills Eye. While I was there in the office on May 1, they said they couldn’t release the images until the doctor had seen them… ok, I get it. That’s reasonable enough. I believe I did ask if I could leave a request there for them to mail a CD of images to me once the doctor had reviewed them. Nope – sorry, no can do. So, later this year, I submitted a records request and the first lady said I had to contact the Wills Eye diagnostics department for those images – she forgot to forward me. I call the diagnostics department –> “Oh, we only have the images that we took; you’ll have to call the retinal specialists office to get those.” Will someone please just send me the bloody images please!?!?! Finally, I got a helpful lady at the retinal specialist’s office who I explained the situation to and right away she said “Oh yea, I can have those sent out right away, no problem.” There, did it really have to be that hard??

Next step – there’s a hereditary condition called Leber Hereditary Optic Neuropathy. Since everything else has come back pretty normal, I figured why not go to the next step – get a genetic test done. Finding a lab that offers this test and that was certified in New York State (so that a sample could be drawn and shipped), felt like a magic trick. I ended up having the test done by EGL Genetics in Tucker, Georgia which is not a New York State certified lab and so blood-draw centers won’t touch you with a 10-foot pole. You have to order the blood sample kit from the lab which they Fedex to you. It includes a prepaid, overnight shipping label. I thought I was going to have to go to a blood draw place in Allentown, PA; but thankfully, Internist Associates at Crouse were able to draw the blood with the appropriate forms and kit. I had to fill out some consent forms (since the lab wasn’t NYS certified) and, unbeknownst to me until the sample was shipped and I was expecting the results did I find out that a separate form has to be filled out by my neural ophthalmologist, sent to an un-named (literally – I have no idea what NYS office my Doc had to send the papers to) to get the “permit” approved. The forms would then be faxed down to Georgia so that they could complete the analysis.

All of this was unfortunately not completed by the time my insurance period ended in August so I had to cover that one; ~$900.00 which was actually less than I anticipated. Everyone says genetic testing is SUPER expensive. I’m not saying that $900.00 isn’t expensive, but I was expecting like $2,000 or $3,000 or more, so it’s all about perspective. That result came back negative; thankfully.

Back to present: reason why I’m having a blood sample sent to Germany. I’ve had multiple people tell me that Lyme disease, and tick-borne illnesses in general, are hard to diagnose and that test methods for these conditions in the US are about 50% accurate, if that… I was tested twice in the hospital with the usual western blot test and both came back negative. I’ve been consulting with a naturopathic doctor in NYS who recommended I send out a blood sample to the IGeneX laboratory in California – that also came back mostly negative with the exception of two “bands” as they’re called which were inconclusive/indeterminate. My naturopath is of the opinion that I still could be dealing with a hard-to-identify tick-borne illness. Lyme disease, I’ve heard, is the ultimate mimicker of neurological issues and other health problems.

Now that the genetic test came back negative, I’m sort of focused again on Lyme disease (or other tick-borne problem) as the cause of my neuritis. The blood sample that will be sent to Germany will be analyzed for tick-borne illnesses and co-infections. Also – based on the results of my initial appointment in Canada, I wouldn’t be surprised if the doctor there recommended additional tests; but I’ll cross that bridge when I come to it – January 27th, 2020, the date of my follow-up appointment.

I couldn’t get the video of my blood under dark-field microscopy to upload and work properly, so I’ve put a picture I marked up below.

So, you ask – what do all the different color arrows and circles mean?
–> Orange circles – cells likely infected with an unknown parasite.
–> Blue arrows – indented cells that have been pierced by/infected by unknown bacteria.
–> Blue arrow with question mark: uhhhhh – I don’t know.
–> Purple arrow – little squiggly bacteria that you see moving around in the video.
–> Purple arrow with question mark – uhhhh, I don’t know.
–> Light blue arrow pointing at light streaks – that is what acid looks like in the blood. My blood is slightly acidic which makes my red blood cells look like a small stack of pancakes. But the doc said not to worry, she’s seen much worse.

Other conclusions reached by this doctor:
–> My liver is working overtime (not very good);
–> My immune system is working overtime and is a little tired out trying to overcome this infection.
–> My body isn’t producing enough glutathione to fully support detoxification.

After this, I experienced the doctor testing different natural medicines using bio-feedback which was interesting. I had a MORA treatment to help my liver and subsequently an oxygen treatment with a little something added to which was to support my liver as well.

It was very interesting and I’m looking forward to going back. I’ll have the blood drawn and prepped for shipping to Germany, then I’ll meet with the doctor, and finally with another practitioner who will perform some special testing to see if I have mold in my system. Yes – mold toxicity is a cause of optic neuritis.

Because this was in Canada, I did have to pay for it out of pocket and this visit was a little more than the genetic test. But in the end, you can’t put a price on good health, and I’m hoping and praying that the advice I’m getting and the supplements that this doctor has prescribed will help “create a hostile environment” for these creepy things in order to serve them their eviction notice and restore all my vital organs, tissues, cells, and everything else back to good running condition.

Any questions? Yea, me too!

Last thing for the night – I made up a calendar of pictures I took over the course of 2019 and ordered a 2020 calendar. It’s been such a busy week. I’ve been meaning to post pictures of the calendar and list it on sale on Etsy but I just haven’t gotten to it. I’m asking $20/calendar. If you’re interested, let me know. Between Christmas presents and sales, I probably have four or five left in stock. But if there’s a lot of interest, I’ll order more.

2nd annual Broadening Perspectives Adventures calendar.

Here are some photos from this past fall season.

Hannah (left), me (center), and Alina (right). My childhood best friends are so grown up! Congrats Alina and Layne. Love you both. Love you too, Hannah!
Hiking up in the Adirondacks. I love my Jetboil stove!!
My best friend here in Syracuse is expecting (due next week) and I figured I’d make a baby quilt for her. I’m very pleased with how it came out. Thanks to my mom for all the help!! You’re the best.
We embroidered the baby’s name into the little blanket the teddybear is holding! It’s just adorable.
This is one of the pictures that made it into the 2020 calendar!! Sneak peak right here!
Same location as the photo above. This was an early morning drive up to Sun Valley from Twin Falls, Idaho. I’d always wanted to see Sun Valley and so figured I had a little time and an awesome rental car and so I went for a drive and caught a stunning sunrise on a quiet two-lane road.
A photo that essentially got an honorable mention but didn’t make it into calendar prime time.
Shoshone Falls, outside of Twin Falls, Idaho.
It’s really a great little backpacking cook stove!

That’s all for now! Have a great night and a great weekend! Oooo… and I’m visiting my first baby niece in mid-January! Super excited for that.

4 thoughts on “Happy Holidays!! End-of-2019 Update

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