Roller Coaster (of Health)

At the moment, I’m doing the best that I have since 2008. I went into the pit again before getting here, though, from an unexpected cause – intestinal parasites. Two of them.

2017 and most of 2018 were good. For Christmas 2016, I received the fancy bread machine I’d wanted for two decades, and in addition to making loaves of bread for Chimp, I started up a hobby of making cakes using its cake cycle, for which I could manage the measuring on good days. I improved to the point that in addition to being able to get from bedroom to dayroom in the morning and back in the evening, by mid-2018 I could walk to the bathroom pretty much every time I needed it. In summer 2018 I was able to walk out into our garden to harvest a few days a week.

I also spent 2017 and 2018 slowly reducing my sleep medications. I was eventually able to drop back to taking just one round of them and I had reduced even that a lot.

I felt like I was getting very close to being able to refer to myself as housebound rather than bedridden, though the duration I could be upright was still very limited. And then –

In the early summer of 2018, I had a little bout of what was probably foodborne illness. It caused me to lose a couple pounds, which I put back on during July. After that I started losing weight.

At first the change seemed like normal fluctuation, and I was fine with it – I had wanted to lose two pounds anyhow.

But then my GI tract kept misbehaving and my weight kept falling.

In the late summer and fall, I got several infections in a row that each required antibiotics – four courses over four months. I had a UTI, followed by a skin abscess, an abscessed tooth under an old filling, and then a mysteriously infected finger.

Thankfully, each infection was knocked out in succession (and for none of them was a fluoroquinolone required; I’ve still never taken one), but that was a lot of drugs that are tough on me in a very short time. And while the UTI and abscessed tooth were explicable, the two skin infections added to that were surprising.

Then, after the antibiotic carpet-bombing of my gut, my digestion became a lot touchier. At first that, too, was unsurprising – but matters didn’t settle out like they should have.

As all this progressed I began having trouble with my heart rate, despite my long-acting beta blocker. I started using my additional rescue beta blocker, but that kept me from sleeping.

My sleep – those of you who’ve visited me here before knew this was coming, I’m sure – had already started going to pieces. I started ramping back up all the hard-fought dosage reductions I’d made, but even that was no help.

Meanwhile, my weight kept going down, despite having boosted calories a lot.

By Christmas I had lost fifteen pounds, getting down to 102, which was six pounds lower than it’d ever been at my adult height, and I was back to being really bedridden again, only able to get up for the commode. On the morning of Christmas 2018, having not slept well for nine nights, I woke up with my heart in some low-grade tach, and we went to the ER to see if some fluids would help me sleep, as it sometimes has in the past. It helped a little.

By the time first of 2019 rolled around, I had been knocked so far down that I wasn’t able to be on the internet more than a few moments a day and I couldn’t hold a book – all that bad territory I’ve been over before, more than once.

To add to the difficulty, there was the doctor shuffle. While I don’t need to mention many of the doctors more than once, I’ll give each one a pseudonym, because there are several involved.

The GP I’d had as long as we’ve lived in Pennsylvania (Dr. Optimal) had left the area at the beginning of 2018. With their departure, the practice had given me to one of the residents (Dr. Resident). This was okay when I was okay and only needed medication refills, but as I started to go downhill, it was clear that person was utterly out of their depth with my case, and being a resident, having to clear everything with a supervising doctor (Dr. Supervisor) meant there were two people I had to convince of the merits of anything that needed doing. This did not go well – I lost my temper unbecomingly at one appointment when Dr. Resident was not permitted to prescribe recommended therapies for an ME crash that I’d brought documentation about from Dr. Cheney.

After that, I asked to be moved to one of the supervising doctors. I asked to be moved to the person I did because that supervising doctor had sat on the independent review board at the college where Chimp teaches, so Chimp had interacted with them some.

That person, whom I saw a few times in early 2019, turned out to be a terrible fit (Dr. Badfit). As I deteriorated, they essentially ignored me, for reasons that became clear only later. But at the time, with no help coming from the avenue it should have been, we started looking for other ways to find out what might be wrong.

Now, why wasn’t I calling on Dr. Cheney in this? I hadn’t seen Dr. Cheney in several years, not since he’d gone into full retirement for a while because of his own health, so he couldn’t treat me. But given the picture I presented to him over email, he suggested a comprehensive digestion function test, the GI-MAP from Diagnostic Solutions, which he thought might turn up answers. He also thought a SIBO test would be worthwhile.

I discovered that in my state, it was legal for a dietitian to write orders for such tests, so I found a dietitian online who consults on digestive issues and was able to write an order.

Waiting for the kits to arrive to us, return to the labs, and for the results to arrive took a few weeks, but it seemed to take an age, given how precarious I felt.

In the meantime, having noticed that I slept much better the night after I ate the very restricted diet required for the SIBO test, I decided to shift what I ate to try to give my obviously-beleaguered gut a break. I started on a FODMAP plan, giving up my beloved legumes and a lot of favorite vegetables (honestly, nearly every vegetable is my favorite vegetable). The FODMAP approach seemed to help my digestion right away, so I stuck with it.

To feel like I was doing something until I could get some proper meds for whatever was going on, I added mealtime betaine, upped my digestive enzymes, and started l-glutamine and taurine at night, which are both supposed to help with intestinal permeability.

We got the SIBO test back first. It showed elevated methane, but not hydrogen. That didn’t seem like much of an answer, given how much worse my gut was than it had once been.

Then I got the GI-MAP back.

I was absolutely loaded with microsporidia – the GI-MAP looks for Encephalitozoon intestinalis – and was also supporting a substantial colony of Cyclospora.

As all this was going on, Dr. Badfit announced they were leaving the practice and the area, which explained but certainly didn’t excuse their having ignored me. Their departure was fine with me, as in the last appointment I’d had with them, where I was writhing with gut pain, hadn’t slept well in weeks, and was pleading to have my fifteen-pound weight loss taken seriously, they said that they thought I was taking too many drugs and if I continued to see them, implied they wouldn’t be willing to continue to write my sleep meds. An angel of an administrator, who we suspect had noticed how badly I needed a change in treatment, called us as soon as the news of this doctor’s departure broke and moved me to a doctor she’d hand-picked for me.

This doctor (Dr. Goodnew) was a younger person, who had not treated microsporidiosis before. They weren’t comfortable prescribing the drug used for it, albendazole – it’s considered heavy artillery, necessitating liver checks beforehand and along the standard ten-day course – so they referred me to an infectious disease specialist in Pittsburgh. I was able to get an appointment with that person sixteen days out, in the middle of March, which felt like another absolute age.

The infectious disease specialist was not convinced that microsporidiosis and cyclosporiasis were the problem. In the U.S., microsporidiosis has historically occurred in immune-compromised populations, notably people with AIDS. As the appointment progressed, I felt a sinking feeling that despite the information I’d brought on ME’s immune problems and gut vulnerabilities, this doctor (Dr. Skeptical) was not going to prescribe the anthelmintic – and then, when I had just uttered a beseeching “…but fifteen pounds…” at the last moment, they did. They wrote an antibiotic for the cyclospora as well, which was one that I’ve taken before and tolerated.

It took another several days for our pharmacy to get the albendazole, which was what I wanted to begin with, as the GI-MAP indicated my burden of microsporidia was the greater. When we had it in hand, I started with a chip the first night, in case of a strong negative reaction. Not getting one, the next day I took three-quarters of the standard dose. I intended to ramp up to the full adult dose, but looking at the child dose per kilogram and considering where my weight was, I wasn’t able to overcome my anxiety about overdosing myself to do so.

At the halfway point of the course, which happened to be on a Friday, I went to have the blood draw done. My liver markers had gone up, but they weren’t in the elevated range, and my neutrophils had dropped by more than 40%, but weren’t in the depressed range. Not being able to get an answer on a Friday afternoon as to whether I could expect those numbers to hold or continue to worsen, and because I was feeling markedly worse that day, despite getting enough sleep, I decided to take the weekend off the drug. I felt better as it left my system, and I ended up not restarting it.

I felt a little better almost immediately after that five-day course. A couple weeks later, I repeated the GI-MAP test. It showed that the microsporidia, which I’d taken a drug for, was gone, and so was the cyclospora, which I hadn’t – I’d wanted to wait a bit and be sure the antibiotic was necessary before bombing my gut again, and it turned out not to be.

The last week of May, my mom and Chimp towed me down to North Carolina to see Dr. Cheney. I was still wrestling with my heart rate.

I had added some calcium earlier in the year that had seemed to help my heart rate some, but I didn’t start making significant progress on getting the heart rate back where it should have been until August of that year, when I switched back to my old beta blocker, metoprolol ER. When metoprolol ER wasn’t keeping my heart rate down in the early part of the year, Dr. Badfit had moved me from metoprolol ER to carvedilol. Not being an ER type, that meant that my heart rate see-sawed over the course of the day. I asked to try ER carvedilol, but it turned out that the practice thought prescribing ER carvedilol should only come from a cardiologist, and in no form did I feel prepared to add to the circus a cardiologist, who undoubtedly wouldn’t be familiar with nor likely believe in the heart issues in the illness. When I saw Dr. Cheney in May, he said he preferred metoprolol ER and he didn’t want to switch me to carvedilol ER either.

It took me until the end of July to steel myself to switch back to the metoprolol ER, despite having taken it for a decade previous, because carvedilol had seemed to help with my sleep more than the metoprolol ER had historically. I became convinced that as the metoprolol ER hadn’t kept up during the worst of the downturn, it might still not be up to the job of keeping my heart rate down – and that switching might foul up my sleep. Switching means three days while the other drug reaches a steady-state level to see if it works, and the idea of spending most of a week on changing to and back if it *didn’t* work, which would surely knock me back badly if it didn’t, was not something I could convince myself to try for a while.

When I did switch back, it went fine and I wished I’d done it months earlier. It took a month for my heart rate to settle into a significantly lower normal, though – I think it’d been see-sawing so long that it took time for me to heal from the stress of that.

Shifting back to the metoprolol ER turned out to be the last piece I needed to really start to make some progress. Within a month of making that change – you people with ME know that’s light speed – I’d made my first post-parasite bread machine cake.

Since last August I’ve made good progress. I think I’ve probably reached what is the possible functional ceiling for me for now, one that was established by the 2007 crash that ended my career. But that’s much better than where I was, and there’s much to appreciate where I am at the moment.

I can eat a broader diet. Getting my gut to accept more foods has been a slow process. I stuck with the FODMAP plan closely for about eight months total. Every so often, I would try some food I used to consume without a problem and it’d be one. September of 2019 was the first time that I tried that and it wasn’t an issue. At that point I was able to start expanding my vegetables a bit, but it wasn’t until spring of 2020 that I got the courage up to slowly go back to legumes. They had not historically been difficult to digest for me, and that tolerance appears to have returned, much to my happiness.

I’ve gained the weight back too. I weigh about 123 at the moment, which is six pounds up from where I was before all this began, and I think my caloric absorption is as good or better than it has been the entire time I’ve been ill. Some of that is probably the supplements I added to help my gut while it was struggling so much, but given how much difference getting rid of them has made I wonder how long I might have been carrying those deleterious actors around.

At the moment I’m able to get together my own breakfast (heating up frozen fruit in a pot, spooning out yogurt) and lunch (heating up something in a pot and/or spooning out a salad).

A lot of the time what I heat up for lunch is something I’ve previously cooked – I’ve been able to return to some simple cooking, like making a pot of legumes or a cooked vegetable salad once a week.

Being able to cook a little again has impelled me to take my food blog out of the mothballs it’d been in for a long time. My goal is to post once per month. I’m not making that goal so far, as I have to wedge the multiple trials of a recipe required among everything else, and my recipes don’t tend to be simple, so most of them take me multiple days, but it’s lovely to be able to work on recipe development a little again.

Another change that this improvement has brought is increased self-care. I’ve been able to begin bathing myself without help for the first time since 2008. All that time, Chimp or my mom had been helping by setting up for me, washing my hair, and putting the bathroom to rights afterwards. Now I’m doing my own bathing. It is a big energy expenditure, and I have to limit what else I try to do on the days I bathe, but it’s very pleasant to have a bit more independence in that regard at the moment. It is lonely in there, though – I got so used to having someone else wash my hair that it’s strange not to have conversation while it’s happening.

I’ve also found that I’m able to get by with less sleep than I absolutely had to have for a long time. At the moment I’m doing okay with somewhere between seven and eight hours, when for years I felt wretched if I didn’t get nine, and at some points unless I got ten. It is an enormous gift to get a couple hours more consciousness per day.

Lastly, I’ve finally been able to see, in person, all the rooms in the house I’ve lived in since 2009. Before this year, I’d never seen the laundry room, workroom, or garage except in photographs. Now I’ve had a tour of the basement and seen them all. I’ve even carried down and started some laundry once or twice.

I suppose this notable improvement post-parasite treatment is probably leaving some readers with some of the same questions it’s left me with.

Why have I made improvement now? My theories are these:

1. I’d been carrying around the microsporidia and/or cyclospora, and it’d been crippling me, a lot longer than I realized and it only got completely out of control and obvious once I had those several courses of antibiotics in a row in fall 2018

or

2. The microsporidia and/or cyclospora were relatively new and the repeated infections were because my immune system was trying to fight them, and not succeeding, and the gut supplements are what’s helping – just because I’ve long needed them. Perhaps I’m getting better absorption, thus just better nourished, and my body’s not struggling along with marginal nutrition.

Of these two, I lean toward #1. Given that a bad case of what seemed to be food poisoning that I had in 2004 was one of the precipitating events in my becoming chronically ill, and that I lost fifteen pounds as soon as I got sick, I think it’s possible I’ve been carrying one or both of the parasites around for years. But that’s not a wonder I’ll ever be able to answer now.

If I had two intestinal parasites, and I’ve improved now that I don’t have them, do I still have ME? Yes, I have no reason to think I don’t have ME. I still have post-exertional neuroimmune exhaustion, orthostatic intolerance, sleep difficulties, brain fog, myalgia, thermoregulation problems, the kit and kaboodle I’ve long had. I will say my light and sound sensitivity are not as severe as they have been, but even that’s not normal as compared to before I fell ill in 2004.

Where did I get the intestinal parasites? There’s no way to know for sure from what I picked them up, really. I do eat more produce than average, so my aggregate risk of a produce-borne parasite is likely higher than average. I did discover, while reading about microsporidia, that they’ve been found on some items I have regularly consumed in the past – herbs, strawberries, raspberries. But many others eat those too and don’t apparently have this issue.

Am I doing anything differently to prevent getting parasites again? Because there’s no research on microsporidia and cyclospora in ME, I don’t know if I’m especially vulnerable to them or just unlucky. I’ve made some changes to my diet, attempting to add a kill step before consumption to everything. This isn’t fun – I do miss raw vegetables and fruit out of hand – but for now it’s what I feel safest doing.

 

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7 Responses to Roller Coaster (of Health)

  1. It’s so good to hear that you are doing better, though not good that you had to suffer for so long to get to this point. I loved hearing that you finally got to have a full tour of your house! It’s really the little things you appreciate after a while. Here’s hoping this good period lasts

    • Jocelyn says:

      Many thanks, FoodFreeFoodie! Yes, it’s really satisfying to have a mental map of the dwelling. Seems to satisfy a primeval urge for safety through understanding one’s territory.

  2. Judy says:

    Hi Jocelyn, I’ve been following your blog for a long time and I’m glad to hear of your progress. This stupid disease is bizarre and you’ve had a terrible case of it. I have CFS and I’ve been damaged by the benzo drugs as well. I’m reading the book Plague by Judy Mikovits. Remember Judy Mikovits? She’s the scientist who was working with the HIV virus and thought CFS was caused by a mouse retrovirus MXRV that was contaminating vaccines and blood products. She’s been demonized by Dr. Fauci and the CDC and even jailed because she was linking CFS and autism to these products. I remember your story of how your CFS started with some vaccination.
    Mikovits has another newer book out but I haven’t received that one yet.
    Good luck with your protocol and I hope this is just the beginning of gaining back some health and if I come across anything that helps me and my CFS I’ll let you know about it.
    I had some digestive problems last year and I figured out I had to give up gluten and dairy and I added L-glutamine and celery juice and cabbage juice and once in a while I eat some artichoke and that has helped my stomach problems.
    Take care and keep posting to your blog!!

    • Jocelyn says:

      Thank you, Judy! Likewise, I’m glad to hear you’ve figured out some digestive strategies that are working for you!

      I have seen Judy’s late appearances in the media. I thought that YT video she appeared in badly conflated a lot of information in a way that would be misleading to people who weren’t familiar with the WPI situation.

      Yes, I am probably a vaccine-injured person – my descent into ME began with a flu shot – but I am not anti-vaccine.

  3. Inge Heinrich says:

    Hi Joceline,
    I am glad hearing from you and your honest, matter of fact description of the ME roller coaster. From one insomniac to another I found it interesting that you could skip 2/3rd of your sleep medication and unfortunately due to relapse had to increase dose again. I hope for you that now being on the up with the ME you can gain better quality sleep again.
    Thank you for taking the time to record and share your experiences. I think most of us know that something is not right with our guts but few are able to get the correct tests and treatments, at least here in the UK.
    Wishing you to enjoy your new found freedom to the full!
    All the best
    Inge

    • Jocelyn says:

      Thanks, Inge! Yes, the sleep med levels are interesting. I really do wonder what the mechanism of worse sleep while parasite-ridden was actually due to. Neither of the parasites are really notable for insomnia as a symptom, but of course most of the people getting it don’t also have ME.

      I always want to try to operate with the minimum meds practicable, and what that is has been so different at different times. I do think I get better quality sleep with more of some drugs than I’m taking at the moment, but there’s that balancing act of how good my sleep is and how logy that will make me in the morning.

      I do see UK nutritionists offering access to the GI-MAP, but of course I suppose the cost would be out of pocket (as it was here). If we hadn’t had Dr. Cheney in our corner I can’t imagine how we could have arrived at a place of getting answers. Parasites are so far down the list of things considered reasonable to check for.

      Gut stuff in general is so interesting and so far seems so poorly understood. If humanity makes it another several hundred years, I think people will look back on our level of understanding of the functioning of our microbiome now and think of it as a real Dark Age.

      • Inge says:

        Tanks, Jocelyn, for responding.
        My insomnia is always worse when I encounter physical and/or psychological stress. I would think having an overgrowth of parasites falls into the physiological category. And I agree we severe insomniacs walk on a knife’s edge to balance medication use and reasonable quality of life.
        Thank you for pointing out the possibility of accessing the GI-MAP though a nutritionist here in the UK. I live in the countryside and cannot travel but these days it might be possible to get a prescription through Skype. At least one benefit of the covid-19 lock down! Much more virtual visits will be possible in future.
        I just wish that the ME research would make similar strides out of the ‘Dark Age’ as the microbiome research…..

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