My tonsil got me potentially-life-altering IVIG therapy.

And here’s how.

Intravenous immunoglobulin (or IVIG) is a blood product made from thousands of donors to produce just a single dose, and used in the treatment of immunodeficiency and immune-mediated neurological disease, amongst other serious things.

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 and 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 had gotten some type of stubborn virus, began to worry, and decided I needed to make an 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. 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 nagging intuition that I should call back AGAIN and take the cancellation they 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–finally feel at ease.

I felt 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, because the grapefruit seed extract/olive leaf extract rinse I’d been using had–between making the appointment while in severe pain and the days before the appointment actually arrived–helped my tonsil to the point of there being no spots left. “Luckily” I didn’t. 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 M.E. is, but understands that it inflames my brain and causes progressive muscle weakness. He was knowledgable 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, that I’d never even mentioned IVIG to anyone, and no one had ever offered it to me. (If you’re not aware, there’s a certain supply of IVIG and they don’t just give it to anyone.) So, staring at my page-long medical history and at a loss of how to help me, he offered it to me!

So, 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, gotten approved 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 IVIG 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! And if I feel safe enough, they can even come do the infusions in my home!! Which, by the way? Is a method of infusion that my insurance had only begun approving three days before that appointment.

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 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. Frankly, since the severe pain has subsided, I’m content to let it work itself out, now! (With some grapefruit seed extract rinse, to help things along.)

My favourite part about this, besides the actual IVIG, is that I get fluids before and after each all-day infusion because of my chronic dehydration. And I get to do this once a month. Which means I get fluids once a month. I haven’t said anything here, but I’ve returned to needing fluids in the ER every few months. Some friends helped me discover coconut water in June, which has helped a lot–now I just come very close but can usually “save myself”–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. I finally see a new endocrinologist later this month to discuss treatment for what was in 2009 borderline adrenal insufficiency, which should help that even more.

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!

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

No more minocycline and guilt over happiness.

The reason I have this blog is to keep track of my symptoms and occasionally share a ramble. I never imagined I’d be getting thousands of visitors… Thank you, for your views and your comments, and I sincerely hope the things I’ve written can help someone else. Many of you have shared that they have, and I will always feel blessed by it.

So yes, I need to update on a few things for future reference… The first one being: My brain fog. If I haven’t said it before, let me say it now: Flagyl gives me the worst brain fog ever. I’m glad I only take it four days a week. My typing has been fairly atrocious lately (sometimes worse than others) so I apologize in advance if this entry doesn’t come out right. I know some of you have to translate it into your native language and this one might not be.. erm.. see, I can’t even think of how to finish that statement! :\

My eyes have been hurting for weeks. I’m so sensitive to light, and I get stabbing pains in them. I’ve spent the past week in the dark. My nervous system has been very sensitive, in general, since I started treatment, however my eyes don’t usually hurt this much… I’m wondering if the Nasonex has anything to do with it. I’ve taken it for.. probably a decade, now? But I had a two year break, and I don’t recall it having an accompanying Glaucoma Warning in the past…? But it does, now. I’ve stopped needing it, so I stopped it two days ago. Today my eyes ARE better, but it’s impossible to draw any conclusions from that. It’s probably just coincidental timing and I’ll get a severe case of eye pain tonight like I did yesterday, aha. If in the future, however, I start Nasonex and get crazy eye symptoms, I’ll know something.

It would appear that warning-hive I got a few weeks ago held true to its title. On the 12th of May, I got very, very sick, and had to stop all antibiotics. Aside from the fact that I felt completely flu-ish with a severe headache, I’d gotten to the point that I could not eat anything, even drinking water was becoming difficult, and amassed in me shaking, becoming dehydrated, and needing Zofran three times a day to keep my nervous system from having a meltdown. These are the same things that the Doxycycline did to me last year before I was hospitalized for five days. We were worried that the minocycline might do this, too, which is why we’ve been easing into it for all these weeks… It’s clear now that I can no longer handle the tetracyclines. I’m just glad that (1) I knew what was about to happen so I stopped the medicine in time, and (2) that I basically had available to me the same medications that they gave me last year to pull me through it (except re-hydrating took a tad bit longer without an IV). After three “missed” doses of antibiotics I was able to eat a chicken sandwich, and it’s been a steady improvement since then…well, at least in regards to being able to eat and keep food in my system.

Wednesday I couldn’t breathe again, having much the same symptoms as two weeks prior. And I’m still having that problem: I cannot breathe when I sit up, but as long as I’m lying down, I’m pretty much okay, though I still have to gasp for air every so often.

Now, I’ve had flare-ups every two weeks for almost two years, now–since summer of 2010, I believe, when I took grapefruit seed extract (GSE) for a few weeks–so this isn’t too much of a shock. But I usually have Lyme symptoms during those flare ups. This time, I haven’t. At all. I’ve had lung pains, and coughing a lot, and an inability to breathe right. That can’t be Lyme disease?

The reason I assumed the GSE had woken up the Lyme disease when I took it, and gave me flares every two weeks instead of every four weeks, is because GSE is a supposed to be a destroyer of Lyme cysts (i.e., the cysts that the bugs were hiding in, open up and start causing symptoms, then you can kill them with antibiotics)… Well, I’m on Flagyl, which is THE cyst buster, so could that have anything to do with my minor Lyme symptoms during these flares? Or is this not Lyme disease at all, and is it Mycoplasma? My money is on the latter for this particular scenario, given the hive and the breathing problems and lung problems which are all the things that I was worried might happen. :\ Because I tell you, my other symptoms are very mild. Shockingly so. When I was off antibiotics this past week, my neuro symptoms barely even flared up! I’ve been having mild “hot foot” sensations in my right leg, and that’s about it. (My tags say I last had that.. well, let’s just say that every time I’ve mentioned it, I’m also talking about Mycoplasma… The evidence mounts!) Nothing went to attack my arms, nothing started quickly progressing like a starved animal waiting to pounce… That is very exciting, and makes me feel like we’ve at least done something the past four months. As I usually say, time will tell! I’ll keep updating on it, and hopefully a pattern will emerge.

Until then, we just make sure I’m on both Lyme and Mycoplasma antibiotics. So I started Biaxin today! I’ve heard great things about this one, and it treats borrelia burgdorferi and mycoplasma pneumoniae and even bartonella, in the event that some of those critters have survived and are saving up for a revolt. Also, the pills are bright orange!

Ah, and so far, I feel accomplished with my goal to not be advocacy-frenzied. I’ve reposted/retweeted a few things, but that’s about it. Life is good, despite everything. I’m happy, even though I feel like I have society and ten thousand other sources telling me I’m not allowed or shouldn’t be… I’m sick, I’m “supposed” to be complaining about everything, right? Ha. Last week I felt the urge to announce, “I’m so happy to be alive.” Because I was. Because I am. And afterward I felt so odd about it. One friend said, “You feel odd because society tells you to complain about your woes. You’re happy because you see what matters most.” Which is pretty dead-on. Another said that people see someone like me “who is thankful for another day and enjoys life as much as possible, and they make a hateful comment” because they’re trying every materialistic avenue available to them and still can’t feel happiness and appreciation.

I suppose when it comes down to it, I was worried someone would take it in the wrong way, or find a way to interpret it negatively, or think I was just “saying it to be saying it” even though I really do mean it. Also, I didn’t want it to sound conceited? I know people going through minor troubles who are very bothered day in and day out, and I have.. erm, well, a lot of daily troubles and suffering and yet lately I have maintained happiness. It’s just a fact. So I don’t want it to sound like I think I’m better than anyone, or something. Because I used to be bothered by daily insignificant things, too! I’m just so happy to not be that person anymore, to have inner joy no matter what, and I want to keep that balance between expressing that happiness about it, but not rubbing it in everyone’s faces. Then again, I only have so much control over how other people interpret what I say, especially when I know my heart is in the right place: Again, balance.

a rainbow at night

A positive post, with more improvement!

I’ve set some goals for myself:

  1. Brush teeth standing up.
  2. Get out of wheelchair.
  3. Cook for myself.
  4. DRIVE again.
  5. Be able to sit up straight, before I get back problems.

I’ve even already made progess with a few of them. The other day I was able to stand while brushing my teeth, and I’ve been doing it ever since. =) And I’ve been out of my wheelchair most of the time. Yesterday, I even danced! My POTS symptoms, as I mentioned in last post, are much improved but it just depends upon the time of day. I’m trying at various intervals to sit up straight, but I can’t push it too much. I only just now became able to sit up on my own at all; I mustn’t go too far! I now eat twice a day, every day, with lots of healthy snacks in between, and haven’t needed to supplement with Ensure as much. I don’t have as much digestion-related dysautonomia, so I don’t have to split up my meals like I have been for the past two months. It’s such a relief. Since my hospitalization, I was subsconsiously on edge because I never knew what would trigger that domino-effect of terrible symptoms, but I finally feel stable again.

I’m still seeing things. I get headaches every evening around 4-5 o’clock, which has been my pattern since starting the the Rifampin in January. After the Zithro in the late evening (around 6pm), they get worse. Last night my neck was very stiff; it was difficult to even turn my head to the side. I need ibuprofen almost daily at around the 4-5pm interval, as well. The lymph nodes in my throat begin to ache and I feel generally inflamed. I’m lucky that after a decade of taking it, I can still tolerate the ibuprofen, which I attribute to always, ALWAYS taking it with food, or a full glass of milk to coat the stomach. (The aloe vera gel I’ve taken every day for the past seven years probably doesn’t hurt, either.)

Probably the most amazing news I have, is that my 2nd Lyme flare cycle–which I’m near positive began after taking grapefruit seed extract (GFSE) in July of 2010–is, from what I can tell, vanishing. GFSE is known to be a cyst-buster, so my best assumption is that.. it actually did, and the result was another set of replicating Lyme bacteria? This 2nd flare cycle was always milder than my “main” flare cycle (which occurs roughly around the 16-20th), but still encompassed the same type of symptoms: Left sided problems, spine pain, cardiac arrhythmias, severe headaches, and higher fever.

I made a brief mention of this last month, while I was wearing the holter monitor and expecting it to pick up on the arrhythmias that would be happening near the beginning of April… Only to find out, nothing happened at the beginning of April! And this month is the same. I’ve not had any fever, nor severe headache, nor explosion of arrhythmia, nor spine problems. There was the neck pain from last night that I mentioned, and I had one episode of spontaneous arrhythmia yesterday, but this is nothing compared to what “should” be happening. This must mean something very good. =)

Also, I don’t think I ever got to mention my cardiologist appointment on the seventh. He basically said there was nothing there but a fast heartbeat…which is ludicrous, because 90% of the time when I had to press the alert button, I was lying down with a normal heart pace. :\ Unfortunately my appt was early in the morning and I wasn’t able to probe deeper and dispute his “it’s just fast” theory. Doctors are trained to not worry the patient unecessarily, so my best guess is, since he kept repeating “it’s nothing dangerous,” is that whatever was there, he doesn’t think is enough to cause concern. Because of this vanishing 2nd flare cycle, I never did get to record the main, most-troubling arrhytmias that I was having… Which is bittersweet, right? I’m glad that they’re gone, but I wish they had happened while something some recording!!!

I think I’ll end this entry with a new ability scale checkpoint. :) As of right now I think myself to be at.. 20% physical, 35% cognitive, and 28% symptom severity. I had went downwards since my last checkpoint, but I’m back up again, so my physical ability is about the same, I’m slighlty better cognitively, and much better (compared a 7%, at least) with symptom severity.

My mother and I are planning a trip to Walmart for tomorrow. Two sickly women with illnesses that contradict each other, plotting how to attack a supermarket. It should be interesting! I need to find the right time of day to approach so that I won’t need to wait 20 minutes for a mobile scooter to become available! This will be the first time I’ve left the house since that April doctor visit. I can’t wait.

a rainbow at night