New month, new progress, new test results

Spider Web, Rockefeller Forest, Humboldt Redwoods State Park © a rainbow at night

I’m pleased to be writing that I’ve made many great strides in getting my life back on track over the last three weeks. I logged back into my Twitter account and began using it on a daily basis; participated in two “spoonie” meet-ups online, #SpoonieChat and #SCTweetFlix; am replying to some messages when my brain has readily-available thoughts on the topic; and have joined a sort-of spoonie/artist/support group/project, even if I only participate sporadically.

Other things haven’t changed so much. I have yet to open any e-mails, or even log-in to my account for that matter. And I’m still staying far away from the M.E. community and the Lyme disease community, i.e. anything to do with that style of advocacy or activism. I momentarily tried to look at how the Lyme community was fairing, but immediately saw memorial posts concerning a young woman’s suicide. I’m not psychologically prepared for that constant exposure again, as I think I’ve made very clear. I stepped into the M.E. community to test the waters, also, but that was equally a mistake.

Mostly, I’ve gained back a lot of personal power that I didn’t even realize I’d given away. I’m on a journey here, and no one has the right to tell me how far along, or at what point on their map, I should be at. I don’t even have the right to talk to myself that way. I’m also under somewhat less stress now that I’m no longer shouldering my family members through their own recoveries. I still have a lot of trouble communicating, particularly in person, but since being on antibiotics for two weeks, that has temporarily improved. In hindsight I wonder if all my temporary improvements in brain function were due to the antibiotics, or just this time.

Now that I’ve moved into the part of grieving where you can look back and see why you handled things the way you did, I realize that I didn’t do much honouring of the choices I made, even the unconscious ones. But I now have the opportunity to re-frame and integrate the experience, so I’m going to take it.

I honour the parts of myself that knew not make my drama everyone else’s responsibility. I honour the parts of myself that recognized I had to heal a little bit more first, or all my interactions would be coloured by distortions too thick to see through. I honour the parts of myself that knew I needed merciful stillness, not ruthless force, and I honour that which gave me permission to listen.

Whereas part of me assumed I’d be swallowed by deep regret over the time lost, friendships lost, and God knows what else once I finally got free, I very surprisingly feel gratitude. 

I’m grateful for even having had the opportunity to take that “time off” to recover. I’m grateful for all the fights I didn’t provoke out of my own pain, had I forced myself to socialize. (Although, in the state I was in, I can’t imagine I’d have been able to find the words for any argument, honestly.) I’m grateful for me being able to realize I was the one who was overburdened with grief, and that it wasn’t anyone else’s job to revolve their life around me to fix that. (Not that I would even do that, but I recently witnessed someone who was blaming an entire community for their own emotional suffering, to the point that they thought the community had to change to make them happy. It did make me think, “Damn, I may have trouble being around certain groups, but at least I realize this is a personal issue, and that no one owes me an apology for living their own life the way they’re entitled to do.”)

I’m still terrified that the day will come when I’ll wake up and everything will have changed without me knowing why, that I won’t be able to tolerate anything again, or another severe trigger or actual lived trauma will set me back months or years. Just as I fear that the next bad headache will be the start of another relapse. Just as someone with depression fears that that one day of sadness will turn into six months of crushing despair. The difference now is.. well, probably something neurological, as the antibiotics have shown me. But I’m no longer allowing that fear to stop me from participating in whatever ways I can choose to, while I’m able.

Thanks to meditation, I have long since found the place in myself that knows It’s not the feelings, nor the thoughts, but the One who is experiencing those things. That place in me is always still, no matter what. To be simplistic, that’s what we call “the lion’s roar” in Buddhism, the ultimate truth within us that causes all other noise to fall away, like beings from all four directions bow away from the sound of the mighty lion’s roar claiming its territory.

From my current perspective, I have two options. I can listen to the survivor’s guilt, the irrational shame, and ruin my life (or at least this stretch of it). Definitely allowed, but not recommended, and clearly unbeneficial. Or, while I’m healing, I can remember that the end point of treatment will be to eventually FEEL that those thoughts are untrue, as well as know that. But the way I see it, there’s zero reason for me to wait until I FEEL those things aren’t true before I start living better. I know the chaos is full of lies, regardless. I know they’re lies now, and I’ll know they’re lies after recovery. Why do I have to wait for my ever-so-fickle feelings to catch up with what I already know, when I can just start living that way, right now? Yes, I’ll still have the thoughts, and they’ll still feel true for the time being, but I know they’re not, and I’d rather have the thoughts while I’m attempting to put my life back together, than have the thoughts while I’m holed up in my house for months.

I can’t give away my power to change the things I can. Because this is how I gave away my strength, by forgetting the immensity of power lying within all the tiny, monotonous choices that actually make or break your life. When I saw myself writing in my last post that I’d started to self-perpetuate my suffering, I knew I had to change that, or it was not going to end well. It also gave me a little hope, because I finally saw a piece of this that was within my control. If there was something I was doing to make this worse, then that also meant there was something I could do to make it better, simply by making a different choice. So I did, and here I am, three weeks later, continuing the momentum that sprung from me publishing that last post after six months of complete silence. That post took me three months. This one took me three weeks. That should say enough.

I don’t doubt I’ll still have “good days” and “bad days.” I’m trying to mitigate the chance of another “disappearance” a bit by taking Sundays offline, in hopes that, like so many other symptoms, if I just rest for a bit regardless of how I feel, I may be able to prevent whatever it is that builds up and make me cognitively shut down. I’m not sure if it’ll work, as I still have no idea what causes that, but I’m trying, damn it.


My latest tests results are equal parts disturbing and fantastic. Good news first?

My last homocysteine level before this one–which, in conjunction with a methylmalonic acid bloodtest, helps determines the rate of your folate metabolism, as well as suggest your risk of stroke and blood clots–was almost 30 (29.4). It’s supposed to be under 10.4 at the maximum, which means it was literally three times as high as it should ever be. Not great! Before my folate deficiency really kicked into gear, it was a lovely 7.2 umol/L. Well as of March, it’s all the way down to 15.8, which is basically only 5-points-above-normal. I’m almost cured of my folate deficiency!

Similarly, when I began treating these methylation problems, I could only tolerate a meager 100 mCg of methylfolate every 3 days. Now, I can tolerate a wonderful *500 mCg* every 3 days, and I’ll probably be able to increase that, soon. (As well as B12, of course, but I need more methylfolate than B12 at this point. I’ve found the hydroxo-cobalamin works much, much, much better than any other type, for me. So heads up: If you have the MTHFR C677TT homozygous polymorphisms, in addition to being homozygous–that is, having both/two copies–of COMT V158M, COMT H62H, *and* MAO-A R297R, like myself, you definitely want to take the hydroxocobalamin form of B12 and just save yourself the money and suffering of trying the other forms. Yes, it works even better than methyl-cobalamin.)

My cholesterol levels are also fantastic and I don’t know if I mentioned here yet, but I’m no longer pre-diabetic after a lot of dietery changes to help treat PCOS. No relapses, there, either!

Now the bad news, even though I don’t know how significant this is yet because I don’t see my neurologist until next week. First, I haven’t found the results of my intracranial pressure reading, or else they aren’t putting it on my online chart, so I don’t know what’s going on, there. I did however get the results of my spinal fluid analysis, and while my glucose is normal (I think?), my protein is normal (I think?), and my white blood cells appear normal (pretty sure?), there were two things that were present that were absolutely not supposed to be: Lots and lots of neutrophils, and blood. I know this could point to meningitis, but I’d like to think if that were the case, my doctor would have called, because that’s serious? So I hope there’s some other explanation. I refuse to Google anything and scare the hell out of myself over what could be going on. I’ll find out soon enough.

Also, while I know the results of my MRI must be in by now, they, too, have not yet posted to my online chart, so I don’t know the results. And honestly, with the wave of fear that overtook me while reading the CSF results, maybe that’s a good thing, in the event it does reveal something troubling.


The spinal tap itself went great, but the recovery was peculiar, and combined with missing my IVIG for two additional weeks, I was feeling beyond terrible. The most bizarre symptom was that I could not stand more than two minutes without severe shaking, all over; the kind of trembling that makes even your teeth chatter together. But I wasn’t cold! Luckily it resolved as soon as I lied back down, but that definitely wasn’t in the “this could happen afterwards” care sheet.

About a week after the lumbar puncture/several days after my eventual IVIG infusion, I had all the symptoms of fighting some type of infection, but without a fever. It was enough to make the room tilt and spin whenever I moved, have hot and cold sweats, cause ringing in my ears, and ultimately a severe headache toward the end, but no fever? Then I remembered, I rarely ever get a fever, no matter what is happening. So after several days of that hell, I said “screw it” and started my antibiotics. I immediately began feeling better, as quickly as the next day. I spoke with my immunologist and was given more antibiotics, and I moved my appointment up by two weeks so we can discuss why my immune system isn’t able to stop all these bizarre infections from happening these last six months, even with the IVIG. I’ll also ask about mold exposure, because that’s a real possibility that I haven’t forgotten about.

During all of that mess I spent most of my time tweeting to pass the hours, and in the process befriended some great people. I tend to feel like an outcast on Twitter the longer I’m on there, so we’ll see how long I last on there this time.

Until next time,

 

Kit

IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.

[estimated reading time: 5 minutes 12 seconds] © a rainbow at night
After almost seven years with this infection, I think the bartonella may be gone for good.

If you recall from this previous post, I talked about how my health was either about to nosedive, or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened? Continue reading “IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.”

The Killer in the Crowd

♪ “Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.

But that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.

I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.

Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.

A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.

The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.

I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.

I regret nothing.

a rainbow at night

My Tonsil Got Me Potentially-Life-Altering IVIG Therapy.

And here’s how.

Intravenous immunoglobulin (IVIG) is a human blood product produced by filtering the antibodies out of thousands of plasma donations–usually over 10,000 per dose–and supplying them intravenously for the treatment of immunodeficiency, immune-mediated neurological disease, and dozens of other serious illnesses.


I guess the story starts several months ago, when I began contemplating seeing my immunologist again to have my immune function retested. Not that long after, I began getting spots on my tonsils, which, after having some lymph node pain in my neck with ear pain, I figured was the result of an ear infection trying to push its way through; the tonsils are lymph nodes, after all.

After my ear improved with tea tree oil drops for three days, the tonsil spots proceeded to go away…and then come back worse. There I was thinking my immune system had won against something, but no! Accompanying this, my neck and face felt like they were on fire, and I had stabbing lymph node pain from my face to my right arm all day. It seemed to irritate the previous nerve damage in my face. (And mind you, I’m already on ibuprofen and percocet daily–the pain was going through them.) I wondered if I hadn’t gotten some type of stubborn virus, began to worry, and decided I needed to make that appointment because I couldn’t handle this one on my own anymore. And getting that appointment went something like this:

Mentally pair my current problem with having wanted to get my immune system checked, anyway.

Decide that’s perfect, I can do two in one; have a great feeling about that.

Call to make an appointment and find out my usual immunologist left, so made appointment with new woman in the office. Suddenly start to feel uneasy that I made that decision while distracted by two people in my car.

Call back to inquire about which immunologist in that office likes complicated cases, because I am one. Receptionist says she doesn’t know, but the one I just made an appointment with was available more (in town more often), so that might be something I could consider; I say okay and hang up.

Still feel uneasy and have nagging intuition that I should call back AGAIN and take the cancellation they’d offered for The Other doctor, even though it was two days later than the one I’d just made and I was really hurting.

Try to find an explanation for this intuition (because I just like to have explanation for things, if I can); begin doing research. Find out the Other Doctor loves complicated cases, AND he has thirty years experience, AND he’s the same doctor I saw twelve years ago at the onset of the M.E. (who helped me even without realizing it by giving me a steroid to slow down the initial inflammation).

Immediately called back for a third time that day to take the cancellation/the appointment with this Other Doctor.

Finally feel at ease.

I felt utterly ridiculous calling back so many times to change appointment dates and doctors, but: Intuition over feeling silly for a few seconds. The strange thing was that when I called to change the appointment–which I’d scheduled with the reason of having tonsil trouble and needing to recheck my immune system function–they asked me, “and you’re beginning IVIG?” I said, “…No? No one has ever offered me that!” and she said, “Hmm, that’s weird! Someone wrote down that you were starting it!” Hmmm…

I’d almost canceled my appointment before ever going to see him (“Other Doctor”), because between making the appointment while in severe pain and the days before the appointment actually arrived, my herbal rinse helped my tonsil to the point of there being no spots left. “Luckily” I didn’t cancel. (By the time I arrived, he actually said it was fine!)

Long story short, my current doctor, the “Other Doctor,” who shall henceforth be referred to as My Immunologist, is wonderful. He doesn’t know fully what myalgic encephalomyelitis (M.E.) is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgeable that once you get certain infections there’s a possibility of them going chronic, so we didn’t have to argue over that. And for some reason, in his chart as well, was written that I was there to start IVIG! I told him the same thing I told the receptionist, that I’d never mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s only a certain supply of IVIG, it’s extremely expensive, and they don’t just give it to anyone.) And so, staring at my page-long medical history, and at a loss of how to help me, he offered it to me!

Thus, because of this tonsil and the other dozen quirky things that got me to that appointment at that time with that doctor, I have now gone through the system and gotten approved for immunoglobulin replacement therapy with the help of test results showing that my immune system is still.. well, my immune system, and both doesn’t have enough of things or produce adequate antibodies, and am starting my first infusion tomorrow, Monday, October 6th, at 9am at an infusion center. 

This will do either one of two things: Help me, or affirmatively rule out that this is never going to be one of my options so I can finally lay it to rest. But I’m obviously banking on it helping!

Of course, my tonsil has done what it’s been doing for literally months now, and the spots have returned and even popped up on both sides of my mouth. We’ve at least ruled out strep, though. He immediately called me in an appointment to the local office to do a culture with his associate, the lady doctor, upon hearing the spots abruptly came back over the weekend after the appointment, and spread. Neither one of them is sure why this is suddenly happening, but she thinks those and my other lymph node pains have been the result of an overburdened lymphatic system and weakened immune system, because nothing else has changed besides my relapse back in June. Basically my body is probably just overwhelmed. I liken it to a skin infection I get on my neck only when my immune system is overwhelmed. This could lead to tonsil stones if it doesn’t clear up, but he’s hoping the IVIG will help that, too (and at least this helped document my need to the insurance companies). Frankly, since the severe pain has subsided, I’m content to let it work itself out, now.

My favourite part about this, besides the actual IVIG, is that I get fluids after each all-day infusion because of my chronic dehydration and MTHFR polymorphisms, the latter of which make me extra susceptible to blood clots. So I get to do this once a month. Which means I get fluids once a month.

I hadn’t written about it here yet, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June and that did help a lot–now I can usually “save myself” when things get close to an emergency–but it’s still a daily battle. So if the IVIG goes well, I can continue getting monthly fluids as well, and dehydration will be one less thing on my balancing plate.

Another thing my bloodwork revealed was a high eosinophil count, which for me means the bartonella and/or mycoplasma are active–no kidding!–as that was one of their first presentations. They’re not as high as they were before when things were progressing really quickly, though, so that’s comforting–maybe this IVIG can help subdue them!? I’m very eager to see what will happen when I can actually make antibodies! :D

I’ve joined the Immunodeficiency Foundation, so if you’re on there, look out for me, or let me know your username. My thoughts about primary immunodeficiency usually take the back-burner in comparison to everything else I must balance, but when I think about it, living with it really does add a layer to my life that people with full-functioning immune systems just don’t have to worry about. I’m looking forward to being part of the support community.


As of this month, it’s now been two years since the big relapse (before this one) that made me stop all treatment in favor of, um, living… Now I get to try this! I’m thinking surely it will do something, for all of these factors to have led me to this point? I don’t believe in coincidence! I’ve been visited by multiple types of owls in my backyard almost every night since this whole tonsil thing started, despite maybe only hearing a wild owl three times in my entire life before this. Owls are symbolic of intuition, wisdom, the ability to see what others do not, and their presence announces a symbolic death, major life transition and upcoming change. 

Last night the Great Horned Owl visited me again.

a rainbow at night

Viruses, more ER visits, and the MTHFR test

I’ve wanted to make some posts, but a few things have set me back. The holidays, unexpected family visitations, and a virus.

Usually I’d go into extensive detail of dates and symptom progression, because the nature of my “viral” infections are questionable as to whether it was an acquired seasonal bug, or a flare-up of something I already have. This was definitely something I caught.

It started with a “feels like I’ve swallowed glass” sore throat and proceeded to cause symptoms of every seasonal fluke known to man…except a cough, THANK GOD! The whole ordeal lasted nine days, if I remember correctly. The first four, my body was trying to figure out what was happening. Aside from feeling especially like hell with glass-throat, I couldn’t tell anything apart from my regular symptoms. And then it abruptly realized I had a bug and went into “attack it!” mode, which sent me to the ER the first time, with rapid-onset fever and of course, dehydration.

The second ER visit was due to intractable head pain. Let’s put it this way: I usually take my pain meds twice a day? I was taking them every four hours, they were only barely working, and I had to set an alarm to wake me up while sleeping to take them or I’d wake up sobbing. It turned out that all the.. I’ll say trauma, of the added stress triggered my occipital neuralgia. Once I figured that out, I was able to treat it, which is to say, use the combination of meds and heat I know to be effective in calming the storm until it passed.

I always say I’d rather have a full-blown migraine for a week than an attack of occipital neuralgia for even one day. They gave me hydromorphone. Twice. (I’ve said to “normals” that they gave me morphine, because everyone know what that is, but they actually gave me Dilaudid, which is about three times stronger than morphine.)

A funny thing happened as I recovered from this. My immune system apparently got distracted from attacking me, and I had much-reduced pain and no vasculitis for about a week. Then it remembered who I was again, but I enjoyed those “days off” from everything!

I haven’t been on ANY of my vitamins or supplements since it started, but another funny thing: I can’t tell any difference. This is a complete 180 from when I was in treatment and I could tell which supplement I forgot by which symptom popped up within the next two days–arrhythmia if I’d forgotten my calcium, a migraine if it was my magnesium, chest pain if Co Q-10. Randomly, but perhaps importantly, I’m REALLY REALLY glad I was taking high-dose Vitamin C in the month prior to that virus finding me! That might be why it took four days to really settle in. (Vitamin C doesn’t help much if you’re healthy, but if you’re immunocompromised it can make a big difference.)

My best guess is that, my body doesn’t need as much help since I am not in treatment? I’d like to think it’s a good thing that I can now survive without supplementation, and I’m not planning on going back on everything unless necessary. I know I need magnesium to preserve my nerve function. And the Co Q-10 for the M.E.; I’ve been having chest pains galore from all the activity sans supplementation to help my muscles recover. And possibly my B-complex, also for nerves, but I’m going to hold off on that until I get the results of this new test I’m having to see if I have the MTHFR gene mutation. (Yes I am aware of what that looks like an abbreviation for, and yes, I laughed.) It can prevent the body from detoxing properly and also cause hyperhomocysteinemia (can we just call that hyperhomo? that’s funny, too) which can result in vascular problems and strange reactions to B vitamins… I have all of that! But of course I have symptoms of everything, so I can’t get TOO excited. It’s a gene mutation genetic polymorphism so it can’t be cured, but it can be managed if we know I have it.

Since I don’t know the rate at which I’ll be posting, I’ll just give you a preview. I’m going to talk about my New Year’s resolutions, how taking a one-month break from Twitter affected me, and how Christianity never helped me deal with the reality of chronic illness. Eventually I will also describe what my pain is actually like, because chronic pain means different things to different people, and I’d like to talk about my version.

See you soon!

a rainbow at night