ARAN makes her first real post in months!

Something I try to do with this blog is make sure it makes sense and follows some semblance of “why yes I DO have a thought process,” but tending to either of those things is going to make this blog entry impossible, and I really need to write. So I’m sorry, people who like sentence structure and who like to translate my entries into their native tongue.

 

My birthday was in August. And it was incredible. Full of love from friends and family and the amazing gift that I was alive to enjoy it. I thanked my Lyme doctor for helping save my life, because without his aid I know I wouldn’t have made it. The whole celebration affair took two days to get through because I didn’t want to exhaust myself–I tried!–but let’s just say, next year I shall ask for more assistance, especially in opening gifts because I did the closest thing possible to arm-murder for someone with M.E. The eustress still affected me profoundly, and the muscle relapse I experienced took me weeks to recover from. By mid-September I did finally get to a place where I was okay enough to start typing, replying to e-mails, et cetera, albeit at a much-reduced level. I think that’s when I made my last entry… Anyway.

Since my last actual update I have been “officially” diagnosed with vasculitis, upped my Biaxin dose, and had to stop everything completely.

 

After a necessary car ride (read as: evacuation) put me in the sunlight for eight hours, my sporadically-present vasculitis-of-the-past-ten-years went into overdrive and has been bothering me daily, often severely, ever since. I have to avoid all sunlight and any temperature change…which I always have to do, but right now it’s even more important. I did get tests to see if anything autoimmune had been triggered, but the tests, ANA and the relatives, were all normal, so that’s good. I got the diagnosis of inflammatory vasculitis on the 6th of September, which ironically was two days after upping my Biaxin to twice daily instead of once daily, but the Biaxin was unrelated, since the problems began days earlier with all that sun exposure. My PCP told me all the weird quirks I’d been having–the INTENSE dizzy spells, the blurred vision, that the main vascular problems were in my hands and feet–were all related. She said it starts in the small blood vessels–ears, eyes, extremities–and spreads from there, and to manage it with ibuprofen, which for now, mostly works.

We want to avoid going on steroids if we can, because of how it suppresses the immune system… But I’ve been off and on Nasonex (an inhaled corticosteroid for sinus problems; I don’t have allergies) and it’s such a catch-22. I always feel better when I’m on it, but it also messes with my immune system so that other problems act up. Sigh.

 

For the most part I have been feeling GREAT with the twice daily Biaxin, but when I’m down, I’m really down. I have no idea what to say about my general health status, otherwise. :\ I always get a bad flare at the beginning of the month because this is one of the bug cycles (I think the Mycoplasma, but maybe the Lyme–I have no idea, I just know it’s not related to my menses because that has no reliable pattern, and hasn’t for years). Well, this month’s flare was absolutely terrible because of being on the doubled antibiotic dosage–”herxapalooza,” as one of my friends calls it.

When I was on Zithro (biaxin’s cousin), there would be one day a month I’d have to stop my antibiotics and let the herx die down, lest I end up it the emergency room. I came very close to going this month, not because of the herx itself, but because of a Migraine that was almost completely resistant to treatment. All I had at my house was off-brand medicine and name-brand Treximet, the latter of which  I cannot take with my type of migraine (which I DID NOT KNOW–need to discuss this with my new neuro!). So that was bad. Bad bad. The aura began with an awful episode of Alice in Wonderland Syndrome on Friday (Sept 28th) and the Migraine began Sunday (Sept 30th). Two days later, that was gone, but I have been sicker than sick ever since the whole thing started.

I have stopped ALL of my antibiotics in an attempt to recover, and I’m planning to resume them Monday if I’m able. If not, I’ll give it another week like I sometimes have to do. It’s been four straight months since having to take any kind of break, so that’s good. I hope it’s just the herxing (my liver is fine, by the way!), because this is a little frightening.

I haven’t needed my wheelchair in months, so I put it in the closet. Then yesterday I went to stand up and almost went to the floor. I’ve had NO trouble walking in months. Now my legs are very weak. It just hits me in “episodes”–one part of the day I’ll be sort-of okay; the rest, I am useless.  This would make sense if I were currently on antibiotics, but I am not. I have been sleeping a ton, and in bed all day regardless, only getting up for the essentials like restroom. And the pain… Oh, the pain. A day or two ago–they all blend together at the moment–I couldn’t so much as roll over in bed without vicodin. The headache phase (as that Migraine went on to irritate every surrounding nerve) has died down for the most part, but now I face exhaustion, flu-like sickness, numbness in my right leg leg and foot, a bizarre action-related tremor in my left hand/arm that has actually been progressing instead of going away… I am hydrated but my blood pressure is poor, I am resting but my heart is weak… My heart has felt weaker the past several weeks, at random. I don’t know what that’s about (side effect of doubled Biaxin?) but my next cardio appointment is in November.

It’s just such a drastic change, and I was doing perfectly fine (relatively speaking) on the doubled dose of antibiotics until this hit… And despite being off of them, it doesn’t appear to be getting better yet, which is concerning when I’ve literally spent the past week in bed and usually this combination lends to me feeling better… Or at least, when it’s M.E.-related, this lends to me feeling better. I suppose, with that in mind, I should stop thinking of it in those terms, because even though the majority of my troubles the past month-and-a-half have been M.E.-related and those ARE improved with rest, these problems I now face probably are not M.E.-related, and therefore there’s no sense in thinking rest will help them. Maybe I’m rushing things, or being impatient, I just wonder what happened that I’m taking so long to recover, and I hope this will all pass over without me being forced into a lower state of fucntioning in the mean time.

 

Three hours after I typed this I was able to come back and fix it up a little, so it’s not too bad… But yes, as to my absence…! I have been doing mostly okay, seemingly doing much better–even starting to prepare my own meals!–until “this” happened.

a rainbow at night

I am not my body.

And yet, I am.

I am not my body because I am not the sickness. I am not the weakness, pain, and systemic dysfunction that prevents me from doing what I attempt on any given day. I am not what my disease does, whether that be physical or mental, and I will not feel guilty because my body is sick. It is not my fault that it cannot function like that of the next “healthy” person. I am separate, I am not the disease, I am not the symptoms, I am not my body.

But I am my body because we have one very important thing in common: No matter what is going on, it always functions to the best of its ability. Each and every moment it aims to support and accommodate me in all that I–and disease–attempt to do. You’re never going to wake up one morning and have it go, “No, don’t feel like giving my all today, sorry.” It may feel like it sometimes, but it never slacks off. It will always do for you everything within its power to keep things running as smoothly as is possible for your situation. A very profound statement was uttered by the doctor of one of my fellow Lymies:

“Your body didn’t betray you. It just compensated and compensated until it couldn’t anymore.” – via Lyme Chick‘s wise doctor

Have truer words been spoken?

This morning I woke up with a rash on my neck. It’s always been one of my signs that my immune system is strained. My first instinct was to berate my immune system for not working properly–don’t I go through enough? But wait a minute… Did it purposely fail me, or not try hard enough to function properly? Did it just get lazy and decide to rash me up? No, not at all. It’s trying its best to support me.

Sometimes what it tries isn’t enough. Sometimes it might even attack me out of confusion. But it, like myself, will always do what it thinks is right, will constantly adapt over and over again to acclimate to the environment.

I am not my body’s shortcomings. It’s doing the best it can for me.

a rainbow at night

(P.S. – Apology for my extended absence forthcoming…)

Asthma, reflections on having PANDAS, and mycoplasma.

First off, I have to say I was shocked at the response I got on my last blog entry. I halfway expected people to yell at me for saying it, but I’m glad everyone connected with it so much!

As for me, I had no idea it’d already been two weeks since I last posted. I have been more social than ever (online), and also more fatigued than ever. Because of this (and my arms, of course) I’ve had to choose my activities wisely, and pick one main thing to do per day.

 

The most important thing to report this time is that my random cough continued to be persistent and began to worsen, so I saw my primary physician who says I now have asthma. (Well, asthmatic bronchitis–two in one, aren’t I lucky!) If I were to assume this to be infection and/or herxing related, I would say this:

Since I’m fighting Mycoplasma pneumoniae, a bacterium that usually causes pneumonia (but also loves to attack your nervous system), my best guess is that treating this beast has caused a lot of die-off in my lungs, where it’s most likely been hiding out, at least partially. And said die-off may be causing the inflammation that’s triggering this asthmatic response… I mean, it can’t be any coincidence that as soon as I start trying to kill the pathogen that has caused lung problems for me in the past, I get inflammation in my lungs, right?

If that’s not it, then I have genetics to thank. But I’m going to go with “will hopefully go away as I treat Mycoplasma” until it proves itself otherwise. At least I’m not having any trouble breathing. I just have this cough, which, after three days on Dulera (which is literally just my Nasonex in an inhalable form…mixed with formoterol), I’m much, much better. :)

 

Also, I’m convinced I had PANDAS as a child. It stands for “pediatric autoimmune illness associated with streptococci,” and is basically what it sounds like: An autoimmune response to a streptococcal infection that causes damage to the brain, primarily resulting in obsessive-compulsive disorder and tic-disorders. In the “My Story” section I ponder over whether or not something triggered my childhood disorders of OCD and Tourette’s Syndrome, whether it could have been a brush with tick-borne infection, or something similar. But this makes too much sense…

  • My immunodeficiency making me extremely susceptible to infections (especially Strep),
  • a history of autoimmune responses to things (like vaccinations),
  • the fact that my OCD and Tourette’s were acute-onset…

With that lovely combination of factors, I was practically a walking target to get M.E. in the future, wasn’t I? :\

People with a history of PANDAS are supposed to stay on prophylactic antibiotics until age 21… Why? To prevent additional episodes of this infection-triggered disorder that could lead to further brain damage. Now I wonder, if my doctors had known about that… If I had been on prophylactic antibiotics until age 21, and that had prevented the two years of slaughter my immune system went through, contracting every infection that passed my way after I got that Hepatitis B inoculation, if the bug that triggered my M.E. would have still triggered it, or maybe I wouldn’t have gotten it… It doesn’t quite matter, at this point. But. It’s interesting. Like another piece of my puzzle…

 

On that note, I have to state the obvious, that Mycoplasma and Strep are very similar in this respect: They usually cause upper respiratory infection, but in the immunocompromised, they can wreak havoc everywhere, especially the nervous system. You know what happened to me when I got both Bartonella and Mycoplasma a month apart from each other in 2008? My Tourette’s syndrome and stuttering flared up so bad I could barely talk to people; I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginning signs of the dystonia since getting Lyme disease (even though I didn’t know I’d gotten Lyme, yet), but after those two infections, things progressed very quickly. (The Tourette’s and stuttering eventually died back down, though they love to pop up at random, especially when I’m under stress.)

Treating Bartonella helped it A LOT…a lot a lot. But the thing is, the antibiotics that treat Bartonella are the same antibiotics that treat Mycoplasma (or at least the ones I was on, except for Bactrim), so I have no idea of knowing which infection is responsible for it. It’s not gone yet (as evidenced by my oromandibular dystonia showing itself more lately), but the worst parts of it stopped progressing after a year on Rifampin (with other antibiotics). That would suggest to me that the Mycoplasma may have been the trigger, while Bartonella aggravated it because it agitates the nervous system so very much.

This is one of the reasons I can’t type up a post explaining my Bartonella experience and treatment: Because even though I can pinpoint a lot of which symptoms were caused by Bartonella–especially the ones that recurred every 5-7 days–I have absolutely no way of knowing exactly which infection caused what, specifically in regards to my dystonia and other related movement disorders. Because I got those infections a month apart from each other, and I treated them both at the same time. I can type about my theories, but I can’t put a bunch of information out there that people are going to read, without being sure. All I have are correlations, and patterns, which I happen to have a talent at spotting.

Two years ago I hypothesized that Mycoplasma (which I easily tested positive for on the first try, unlike the others which I had to coax out with speciality labs) was going to play a much larger role in my health issues than I had at first assumed… I had no idea how right that would be.

If anyone has any experience or information they want to share with me about PANDAS, suspected PANDAS, or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.

a rainbow at night

Another chapter in “ibuprofen always helps,” and the last of the 30-Day Challenge.

I have deductions to report! And photos of my random art and photography! Carry on if you’re brave…

 

Okay, so remember when I–… Actually, I don’t think I said that on this blog. But on Facebook or Twitter, I had mentioned being concerned that the Liver Chi, because it activates the immune system, might cause issues with the M.E., since in the past it’s been like this:

  • Take steroids → M.E. gets better
  • Take immune-activating anything → M.E. flares

So I was thinking maybe it wouldn’t be so bad if I was on the Nasonex at the same time, because they might cancel each other out, with the Nasonex lowering the immune system and the Liver Chi activating it. I started them at the same time and all was well. But, two days after stopping the Nasonex, I had M.E. problems. Coincidence, possibly; I’m not sure. But then this other thing started.

My heart palpitations went through the roof. From maybe one noticeable skip every other week to at least one every hour. :\ I was very concerned, and I thought it might be the Biaxin because it can disrupt one’s QT interval and I sometimes have problems with those medications. My heart beat had been unnaturally fast, even when I wasn’t dehydrated. It averaged about 112 when lying down completely relaxed. And the irregular beats, well… Very prominent, made me cough every time. (Vagus nerve, cough, heart rhythms, all that goes together.) Then one evening several days ago, I needed an ibuprofen for a headache. Just 200mg to start with…and I noticed I didn’t have a single heart palpitation the rest of the night! I thought that was odd… The next day I woke up and took my Liver Chi. My heart went to racing again. After about two hours, I thought, I wonder if I take another ibuprofen… And I did, and my heart rhythm went back to normal. So, the past few days I’ve been taking ibuprofen with my Liver Chi doses, and I haven’t had any problems.

Then today I thought, okay, we have to make sure this isn’t coincidence, so I didn’t take the ibuprofen with the Liver Chi. My heart rate started climbing again. I took ibuprofen, and again, it went back to normal. I have a cardiologist appointment in a week and a half to find out what’s happening, but…

Now I’m wondering, what is going on? Is my heart inflamed? Or my nervous system? What is happening that the liver chi causes a problem and the ibuprofen stops it, that connects to my heart and my heart rhythm? Is it M.E. related? Or something to do with the connection between NSAIDs and orthostatic hypotension? I’m prone to thinking it’s something inflammatory, because this only started after I stopped the Nasonex. But. I don’t know! I just had my bloodwork done so we’ll see how my liver enzymes are holding up next week, and then we’ll see what else happens between now and my cardio appointment. Maybe it’s a herx, who knows. :\

Also, re: Nasonex and my eye problems: Coincidence, because my eyes are still giving me problems. And re: Breathing issues, I have not had any of that since.. well, it continued on several days after my last post, and then stopped. Whether or not it might recur, who knows, but I haven’t had it happen since.

Another random problem I’ve been having is, once a week I involuntarily stay up til six, seven, eight in the morning, until I finally get sleepy and go to bed. I just don’t get tired, and nothing can make me sleep! After four weeks of this, I figured out it was the Flagyl, because it happens after being on it two or three days, of the four consecutive days I take it per week. A friend who was on Tindamax said it did the same thing to her. It’s funny because when I first started Flagyl, all it made me do was sleep, and now…

 

So my brain fog hasn’t been as bad lately! After I made that last post, things got better. Over the years I’ve noticed it seems to do this, cycle in and out; when it cycles out, I read tons and enjoy my brain functioning. I even took a test on my reading speed and got an above-average score! (You read 305 words per minute. That makes you 22% faster than the national average.) And I even passed the three questions they asked afterward! But you know the interesting thing? (And this is how my brain has learned to function over the years of losing regular short-term memory ability: Plasticity is amazing.) I didn’t answer the questions correctly because I actually remembered what the story was about, but I answered them based on what words I remembered seeing. Just an example of how the brain learns to maneuver around its deficits and try to figure out other ways to be functional. When I first took it I was excited because I thought it meant I had reading retention, but. I really didn‘t remember what I had read, just the words I’d saw. I took it again today and now I remember what I read, though! :)

Okay, now enough symptom recapping. I finished my 30-day Challenge. It only took me..almost three months, aha, but I still got it done! Here are some of my final pieces–just quick blobs of watercolour, really, with the occasional photograph. As always, click on “Permalink” when they open in the gallery, to read more about any piece you want.

 

a rainbow at night

On livers and Lyme and dystonia and…another antibiotic break.

On Thursday, the 5th of April, I upped the minocycline to 200mg a day. For the next few days I only noticed a greater need for sleep. Since starting the minocycline in general, I had a greater need for lortab/vicodin (at least once a day) to deal with the head and neck pain (read as: severe), so that also got worse temporarily before tapering off into less-severe pain.

Mostly because of this, my sinuses were really bothering me (hydrocodone causes a release of histamine, and when you stop it, then you can get a rebound release of it), so I had to take Nasonex for several days–it helped so much, and by days Three and Four of being on it, I was outside taking pictures of flowers!! I figure it might have been helping subdue some of the herxing because of its immunosuppressive tendencies. After day Four I was able to stop that, too, since my sinuses had returned to normal.

Then on the 9th I got a fax from my doctor saying my liver enzymes were very elevated. This, after them being perfectly normal two weeks earlier, and me still taking milk thistle three times a day!! I was upset, but I had to stop all antibiotics again.

I don’t know if it was from not taking my antibiotics, beginning that morning when I got the fax, or rebound inflammation from stopping the Nasonex, but I felt absolutely horrid starting that day, and did every day after/have every day since. We’re talking complete flu-feeling and just.. awful. It was the metaphorical equivalent of hitting a bear over the head once, and then standing there staring at it. Lyme is a very, very angry bear. To further my physical suffering, a few days later my Lyme flare up began! D:

And then an old Lyme-related friend came to visit me: Dystonia.

(I tried to kick it out–you must mean the house down the street, no rainbows at night, here!–but, that didn’t work.)

And not just dystonia, but that special brand of dystonia with parkinsonism thrown in there that makes me unable to walk, that makes everything on my left side either fail and freeze, or flail and dance. (Why does Lyme like the left side so much? No one can figure it out, not even the doctors.) It began on the 14th, when I got out of bed, took two steps, and my left leg decided it wanted nothing to do with this “walking” business. Luckily, there are wheelchairs. I still had a lot of movement problems even wheeling about the house, but standing up makes it so much worse in general, even if I’m not trying to walk. It got worse on the 15th and 16th…

I wish I could adequately describe what this type of movement disorder is like. A dear friend of mine in Pennsylvania has the exact same problems I do (also hypertonia, also brain lesions) and despite telling her this, she really didn’t “get” that we were having the same issues or that I really did understand what she meant when she explained them! Then one day I guess I explained it pretty well, and she understood, and didn’t feel so alone. I wish all of us Lymies could record ourselves having these problems and put them on YouTube to give each other some comfort that we’re not alone…but I don’t know how many would go through with it. I know I don’t want people to see me when I’m having these problems; like most, I’d rather just wait it out! :\

Anyway. So a typical “episode” of this happening might start with me attempting to walk. A varying amount of time passes before I slow dramatically and then my left leg will start to drag. If I stand in one place it often curls inward. If I try to walk it is essentially frozen, or moves so little that I might end up walking on the tips of my toes to compensate. Something around my hip/thigh happens and my leg jerks upward, causing me to simultaneously fall forward, often twisting my neck to one side at the same time “for some reason.” I don’t always have to be walking for this to occur. I know low oxygen (or at least low oxygen ratio) makes this worse, because supplemental oxygen always helped in the past.

“A major principle of body movement is that all muscles have an opposing muscle. Movement is possible not just because one muscle becomes more active, but because the opposing muscle relaxes. …Rigidity comes about when, in response to signals from the brain, the delicate balance of opposing muscles is disturbed. The muscles remain constantly tensed and contracted so that the person aches or feels stiff or weak.”

Other times it involves my face and neck–like an episode of Bell’s Palsy that isn’t so much the nerves (I don’t think, at least) as it is the muscles contracting, and causing issues like facial grimacing, an inability to open my left eye all the way (lots of times I cannot look upwards, which is truly disturbing–I don’t think this is dystonia but I wanted to mention it anyway), and my tongue might tremor, etc.

This time, much to my dismay, my arms were involved, interferring with my typing. :( It wasn’t the M.E., and it wasn’t the neuropathy that’s started to invade my arms causing the weakness, but something different. (It’s probably impossible for me to put the difference into words, but I know what that feels like.) They were doing the same thing my legs did–gradually getting slower and slower and it was as if the nerves were failing to send adequate signals, where in my head I was giving them the action I wanted them to perform but everything was going very..very…..slow…… :| (But not the paralysis and takes-five-days-to-recover like the M.E. muscle failure; this is far more neurological.)

And then the 17th happened. Or rather, the night of the 16th when I tried to sleep. I spent all night waking up every hour going “omg I’m going to vomit” and “omg why is everything moving” and then when I woke up once at 7am, the back of my head was killing me (figure of speech, of course). And thus began the cycle of the next five days. But at least after about the 18th, the dystonia and parkinsonism got better and I could walk again. Oh, the things I had happen every morning… One morning was like I described above, for another it was all I could do just to roll onto my back and take medicine, another was gastrointestinal nerve problems that immobilized me in pain, then to add insult to injury, I woke up dehydrated, because I usually do during Lyme flares; it has been an incredibly difficult couple of weeks! What got me through it was knowing that it would pass.

And it did.

The 22nd I felt good enough to take a ride to the city. Well, with the help of adequate medication for pain and inflammation. Right now I’m waiting for a supplement to arrive (tomorrow), so I can resume antibiotics.

I can’t thank God enough for such an absolutely amazing doctor to get me through all of this. Especially after so many years of people who didn’t know what they were doing, no idea how to help me, or just passing me around from doctor to doctor. (From primary to cardiologoist to neurologist to immunologist to infectious disease specialist to another cardiologist to another neurologist to a movement disorder specialist to…) I feel safe in God’s hands and my LLMD’s experience to get me better. He called and told me this herb collection to order for my liver, called Liver Chi. He says he has patients with Lyme-induced MS who are on triple IV antibiotics, their liver enzymes inevitably going high, but who can’t stop treatment for fear of their disease progressing. He thinks I am in that group with the rate that my symptoms progress the moment I stop antibiotics. And if this supplement (a mix of chinese herbs) has been able to bring theirs back down to normal, on all of those antibiotics, I’m sure it can help me get back in treatment! So he said to take a two-week break (which I have), and.. essentially, don’t wait, get the herbs, and resume treatment whenever I got them. And of course keep checking my enzymes.

 

I’ve been doing a lot of art lately to help me cope, so here are a few pieces. Three photos, three paintings. You can click on “Permalink” when they open in the gallery, to read more about any piece you want.

Things I want to add into this post but have no idea how:

  • Ibuprofen always helps. Always.
  • My PCP says I should tell my cardiologist about the fact that I feel like I’m going to pass out when I take a deep breath–I actually had to lie on the examining table this time, which is new. My first guess is my usual lack of my heart rate variability and the fact that it’s supposed to vary when you inhale deeply, but mine often doesn’t… But that’s autonomic neuropathy for you.

a rainbow at night

Dental visits with bartonella…and possible ehrlichiosis.

So I realized another possibility concerning my increased cardiac complications: The dental visit.

I completely forgot to write it up, but on August 24th I finally, finally after four years, was able to get my teeth cleaned! I haven’t since 2007 when I had dental surgery that made me want to die the next day, from the release of bacteria. (And I was on antibiotics for that despite having no knowledge of the Lyme at the time, and not yet having any heart valve issues… If you have certain cardiac problems or immune system dysfunction, you are supposed to be on antibiotics before any kind of dental procedure–even routine cleanings. Everyone else can suffice with antibiotics only before major dental work, and even then it’s often not given.) I was going to go back in February…about a week or so before I ended up in the hospital from the bacteria that were already flooding my body! I cannot even begin to fathom how sick I would have gotten with that “ticking” time bomb (pardon the pun) inside of me. But through what I believe to have been Divine Intervention, I didn’t go, and that’s what matters. :)

Fast forward six months to August 24th, and I was sure I’d be healthy enough for a teeth cleaning! So I went, and the next day I was just fine. :)

Or at least I thought I was…?

Last post, I mentioned chest pain and breathlessness on exertion, and increased arrhythmia (not severe, but often very noticeable) which I figured was probably kept going by the at-the-time electrolyte imbalance… But I’m still having all of that, and I’m not dehydrated.

By this point, I’m near positive most all of the chest pain, arrhythmia, and the shortness of breath when I lie down, is being caused by my mitral regurgitation worsening. Specifically, shortness of breath when lying down is a key symptom of it, so! What I don’t know, is why it’s been getting worse, nor why it suddenly got especially worse the past month. (I see my cardiologist for my repeat echocardiogram in October, just a few weeks away, so there’s that in the event something is going on.) Obviously my first thoughts go to the infection I picked up August 3rd, but, there’s something else.

I said in the last post that this has been getting worse for the past two months, but it’s really been bad since the beginning of September when my Lyme flared up… But with the arrhythmia in particular getting worse even before then (I made a Tweet about it on August 31st, and I know it had been happening a few days prior to that), I can’t help but wonder if the dental visit and its potential to worsen a weakened heart, may be the main reason it got especially bad at that particular time, and has been bad ever since.

I’m hoping this has just been an unfortunate combination of events, with the new bugs (and possibly old bugs) flaring up, and then the dentist… I really wanted to make a note of it for future reference, in case this doesn’t happen to go away. I speak to my Lyme doctor this Wednesday.

a rainbow at night

July IGeneX results.

So a few weeks ago my IGeneX results returned to me.

  1. My Lyme test is more positive. This is actually good, believe it or not! As you improve and your immune system is less burdened, you get more positive results. I now have bands 31, 34, 39–the most Lyme-specific of all, 41, and 58. I’ve never had band 58 before, and I’m not happy about it because this means the bacteria are now resistant to my fever response. This might explain why I don’t even get fevers during my Lyme flares, anymore. (See, this is your proof that they evolve.) And my band 41 now has THREE stars next to it… I didn’t even know you could get three stars! I.e., a very very positive band! I applaud my immune system for its abundance of “+” marks, whereas I’m usually only capable of “IND” bands, the very weakest positive response.
  2. NO Anaplasmosis. Also good! (Tested via IFA.)
  3. NO Babesiosis. VERY good! (Tested via IFA and FISH.)
  4. Possible exposure to either Erlichiosis (HME) or (and most likely) Rickettsia. I’m thinking Rickettsia felis–aka flea-borne spotted fever–is the most probable suspect, given my history of hundreds of catflea bites and the fact that I had a changing spotted rash on my feet for two years afterward. Good news is, Rifampin can treat it, which I’m already on, so. My results are technically showing exposure to E. chaffeensis, but it says on the paper it can cross-react with at least four other types of bugs, including all Rickettsia species.
  5. I FINALLY SHOW EXPOSURE TO BARTONELLA. So take THAT, fifteen other insensitive tests from Quest and Labcorp that said I never had it!!!

Both the Erlichliosis/Rickettsia and Bartonella tests were in the middle category of either resolving or active infection, depending upon your levels and symptoms. My bartonella score was basically borderline positive, but both results came from my IgG, i.e., where I have my immunodeficiency (PIDD, and the reason most of my tests don’t show positive). Which means, if I weren’t immunodeficient and had normal levels of Immunoglobulin G, the scores would have been higher, possibly high enough to surpass the “bordeline” category. Or at least, my bartonella result would be. Regardless of anything, I do have the bacteria antibodies. I am fighting it.

If I don’t have the Rickettsia…well I just HOPE I have/had that one instead of the Ehrlichiosis! It must be the easiest to treat, because I no longer have the spots on my feet and the IgG for it was the lowest it could have been without being negative: Anything below 40 is negative, and I got.. a 40. Accommodating for my PIDD, and it’d probably be slightly higher, but this is nothing to worry about, I don’t think. With no obvious symptoms and such low levels this is most likely in the “resolving infection” category rather than “active infection” (in contrast to the bartonella whose titers are much higher and symptoms still active). Perhaps it is also low because of the cross-reaction factor? I was tested for E. chaffeensis, so if I tested specifically for Rickettsia antibodies, would it be slightly higher? Who knows.

But mainly I am so, so elated that we finally have something that says, Look, the bartonella is here, in contrast to the.. dozen or so other tests I’ve had in the past two years that said I never had it. Pfft! (Only in the chronic illness circle are you happy when tests show something is wrong.) I wish I would have gotten tested for this via IGeneX, sooner! These are my results after six months of Rifampin and Zithro–I only wonder what they’d have been in the beginning!

And by the way. The bartonella species I tested positive for was B. henselae–the cat scratch disease variety! I wasn’t even tested for B. quintana, the type that does the classic five-day fever cycle like I have… So, based upon my symptoms and flare cycle, there’s a high chance that I actually do have them both like I feared last year. (Cat fleas can carry up to five different species of bartonella.) Speaking of that, if I’m correct, B. henselae follows more of a seven day cycle, or at least a less-defined flare cycle than the B. quintana strain… So there: Maybe the bartonella seriously is the reason my Saturdays are so “inexplicably” and yet, reliably, messed up recently…!

As far as how I feel about the results… In a sense, I’m a little relieved to find out that I’ve had two strains of bartonella, and one other resolving (most likely but unconfirmed) Rickettsial infection. It helps me better understand why I became so unimaginably ill within such a short time frame.

I’ve always thought, How on earth can two infections at once bring me down that quickly, even if I did have M.E…. But basically (already having the Lyme for two years, albeit unknowingly) within a matter of two months, I got four infections at once: The bartonella and rickettsia strains from hundreds of catflea bites, and Mycoplasma pneumoniae from the children of a family that came to stay at my house during a bad storm. It makes me think that, even though I was already steadily going downhill with the undiagnosed Lyme disease, at least it did take more than two additional bugs to bring me to almost completely bedridden within eight months.

This is also proof that a negative test means nothing. People need to realize this fact, above all else. We do not have adequate testing–your levels have to be very obvious and you need to have a functioning immune system in order for the routine tests to work. Those are the conditions they were designed to work under, and even then, the CDC admits their inaccuracies are very high. There is a REASON Lyme disease is the fastest spreading infectious disease in the United States.

If you’ve ever been diagnosed with MS, ALS, Parkinsons, RA, Lupus, CFS, or Fibromyalgia, please find an LLMD–Lyme Literate Medical Physican, the people who risk their lives to stand up to the infectious disease society and treat people who are dying–or someone else who completely undestands how common these tickborne (and fleaborne!) infections are becoming. Yes, all of those aforementioned illnesses can exist on their own, but far too many doctors unknowingly use them as catch-all categories due to their ignorance of infectious diseases such as Lyme disease and Mycoplasma. And even if you have M.E., you still need to be tested, because we are suspectible to infections that most people don’t even have to think about. (You’d be well off reading a pamphlet on having HIV, and how to avoid things–like kittens!–that are considered high risk for the immunocompromised.) Lyme can also cause false positives on autoimmune tests (such as ANA and ESR), so even having “confirmation” such as that is no merit to say you’re safe. Everyone owes it to themselves to make sure they don’t have a treatable infection like this; especially when it can and does lead to death if not treated.

a rainbow at night