Resuming Antibiotics for Lyme-Induced Multiple Sclerosis (MS)

© a rainbow at night

In case you missed it buried within my last post: I learned I do have multiple sclerosis. My neurologist said the official diagnosis as of right now is “Clinically Isolated Syndrome,” which can present with or without optic neuritis. Mine presented with, but I recovered well from that attack and my ophthalmologist confirmed there is no permanent damage to my optic nerves.

CIS and MS are the same disease process, but since MS literally means “multiple scars,” CIS is what you call the first episode, because there are a few people who never go on to develop another attack. But that wasn’t actually my first attack, or even my first documented attack. Because I refused to get a spinal tap at the time, the last lesion was attributed to “post-infectious demyelination” or “atypical MS.” They wanted to test my cerebrospinal fluid for Lyme antibodies at the same time as MS markers, and I couldn’t afford to risk a false-negative Lyme test, which my insurance could’ve used to deny coverage for my antibiotics. I have personally watched someone have their treatment revoked until they did additional spinal taps to prove the bacteria were there, and there was no way I was going to chance that happening to me, as horrendously ill as I already was.

I’ve had about five neurologists since 2008 because they keep moving, so my current neurologist is under the impression this is only my first attack, hence the CIS model. Most doctors rigidly hold the belief that neuroborreliosis (Lyme disease that has spread to the brain and spinal cord) and multiple sclerosis are not related, so my “official” diagnosis will change depending on which doctor I see and their level of understanding about my history. At any given time it’s one or more of the following:

  • Post-infectious demyelination
  • Clinically isolated syndrome
  • Multiple sclerosis
  • Atypical MS
  • Relapse-remitting MS
  • Neuroborreliosis
  • Inflammatory disease of the central nervous system
  • Demyelinating disease of the spinal cord
  • Disease of nerves in arms, legs, hands, and feet (what even is this diagnosis?)
Image from “LYMEPOLICYWONK: Misdiagnosis of Lyme disease as MS” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

Without medication, I regularly and predictably relapse about twice a year, about 5 months apart. I think the reason for this is, when my immune system starts to run out of options against the accumulating spirochetes, I usually develop a bacterial infection and require a short course of antibiotics, and those antibiotics also beat the Lyme back into remission for about 4-5 months max. But then the bugs build back up again, and my immune system gets stressed again, and I can’t fight off another bacterial problem again, requiring another short course of antibiotics which tithe me over for another 5 months… And so on. Rinse and repeat for the past five years since stopping Lyme disease treatment in 2012.

It wasn’t always so much like clockwork, though, for many reasons but largely because since “the big relapse” in 2012, I’ve only been able to tolerate an infant’s dose of antibiotics for maybe two days before my brain felt like it would explode. That is, until this year’s miracle happened:

In March, I was able to complete a 10-day course of antibiotics with absolutely no problem, for the first time since The Big Relapse. So, coupled with my new diagnosis, I decided to brave Lyme disease treatment again.

Yes, you read that correctly. What I wrote here five years ago has finally come to fruition:

“My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. … But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.”

My God, to be typing these words… There have been a lot of tears this past week. Over all my suffering, over all the life lessons learned, over all the years it looked like I would never make it here because of the constantly relapsing infections, over all the miracles that took place just in time, every time, so that I evaded further damage, and that I’ve actually healed from much of the damage already sustained… But mainly, over the fact that I am now here, having survived it all physically and mentally, and in a position where I am able to do something about it.

I made it.

And I’m starting treatment again.

We’re going to push it back into remission ON PURPOSE with an ACTUAL TREATMENT PLAN and an ACTUAL DOCTOR, not just skate by on whatever antibiotics I end up on, hoping it’ll be enough to fend off MS for as long as possible. The diagnosis is here! Time is up!


I’m doing pulsed antibiotic therapy this time–please research if you haven’t heard of it–because it turns out this is the best way to handle late stage Lyme disease that anyone knows as of yet. Continuous antibiotics may be necessary at first, but it will eventually come time for maintenance dosing instead of sustained eradication, because while chronic Lyme disease cannot be cured, it can be managed.

And please don’t come at me with your “it CAN be cured!” comments: People can be functionally cured, where the bacterial load is so low that it cannot cause problems, but there is no known way to permanently cure late stage Lyme disease, yet. It goes up there with all the other infections your body just learns to adapt to and live with, but which can cause problems again if conditions arise, and that is okay.

I wish someone had told me this when I first got diagnosed, but we truly are so much more advanced as a society in our knowledge of “chronic Lyme” than we were 11 years ago when I got infected. Back then, biofilms in Lyme were just a hypothesis, as was the idea that antibiotics were causing the bacteria to hide instead of die, both of which are proven facts, today.

It’s actually a comfort to know that even the strongest of bodies cannot keep these spirochetes under complete control, because it keeps in perspective that this is not just “my” body’s failure, or “your” body’s failure, but it’s not even a failure at all: It is the natural course of this disease to relapse and remit, and it is not your fault. There is nothing you were supposed to have done to keep it from doing whatever it’s doing, what it already did, or what it’s trying to do. I repeat, it is not your fault that you still have Lyme disease, and again, late stage Lyme disease CAN be managed. Alright.

Now, according to this 700 patient survey, only 55% of people with Lyme-Induced Multiple Sclerosis get better with antibiotics once the disease has advanced to this level. However, I’ve beaten the odds many times before, so I’m just going to do what I can do for as long as I can do it. This online research has many limitations but it does mirror the general consensus I’ve heard throughout the years.

Image from “LYMEPOLICYWONK: Do antibiotics help patients with Lyme disease who are also diagnosed with MS?” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

The reason for these hit-or-miss success levels is believed to be because killing the bacteria when they have already initiated an attack on your nervous system has the potential to further advance the disease instead of abating it, because when the bacteria die they cause an inflammatory reaction. Adding further inflammation, in the form of your immune system going in to clean up dead bugs, to an area that is already inflamed because the immune system is already active there, will make things temporarily worse. The $64,000 question is whether the brain will recover or is there so much infection that this additional inflammation caused by the dying bacteria will be just as bad if not worse than the inflammation caused by just letting the disease take its course.

People with tapeworms in their brain face a similar dilemma: Because a dead worm in your brain could trigger such a massive immune response to clean it up, many must simply live with the parasite latent in their brain instead of attempting to kill it, which could actually turn around and kill them, too. We need to realign our focus with living a good life, not becoming “bug free.” They are not mutually exclusive.

I couldn’t pulse antibiotics five years ago because treating bartonella was the priority, and you cannot do pulse therapy with bartonella bacteria present. They mutate far too quickly in their attempt to survive, and become resistant to the antibiotics used. Some antibiotics like Rifampin can lose their efficacy after just one break in treatment, rendering it permanently ineffective against the strains present. So, long story short, I needed continuous antibiotics for bartonella for about two years, with lots of complications, it still relapsed, and only starting IVIG two years later saved me. But before all the latter happened, I made it about six months on continuous Lyme-specific antibiotics–the same ones I’m on now–before I hit the infamous treatment wall and became too ill to tolerate absolutely anything. I.e. “The Big Relapse.”

(I feel like I repeat myself a lot here, but I know most people don’t have the time or energy to go back and read how I got here or why my treatment is taking/has taken this route. All that is available, though, if you’re interested–there’s a directory of categories and tags/content at the bottom of this site.)

We’ve no way of knowing how I’ll respond to things this time, but just based on how I responded to mere Amoxicillin at the beginning of this year, I think I stand a chance to respond favorably. I’m running out of time to do something here, regardless. According to my last MRI, there’s a potential “something” in the front part of my brain that they’re going to “watch.” I just did two spinal MRIs and should find out the results this week.

One amazing thing I learned, though–again, only by getting a copy of my MRI results–is that I have successfully REmyelinated! The biggest brain lesion from my first Lyme/MS attack is fully healed!! About a year or two ago, I suddenly realized I could walk in the dark again without falling over, which I hadn’t been able to do since my hospitalization around 2010/2011. I assumed my brain had found some way around this damage by using its innate plasticity (i.e. maybe it formed some new pathways to circumvent the lesion) but no! Even better! It HEALED!

I am so proud of my body and its resilience. It’s things like this that inspire and remind me that it’s not too late to heal, and that my body still prioritizes towards homeostasis and wellness.

I’ve finished my first pulse, and I already feel so much clearer in my head it’s ridiculous. I owe this entire post to those antibiotics. In fact the last several blog posts I published before this one were antibiotic-induced (haha), where I hadn’t been able to finish anything since they wore off. The only thing I managed to type for this post before starting treatment last Thursday was one paragraph that took me an hour and a half, that absolutely exhausted me and ultimately made such little sense I had to delete it altogether, anyway. But after antibiotics? I typed the entire draft of this post you’re reading, in one day. Another day was spent editing, and today I finished polishing it up to be scheduled for tomorrow morning. But go ahead and tell us, IDSA, how antibiotics don’t do anything for us, will you?

Experiencing this phenomena again essentially confirms to me (1) how I was ever able to maintain this blog all those years ago, and (2) why I steadily and progressively lost the ability to write the longer I went without antibiotics, eventually getting to the point where I could only post when I’d taken an antibiotic or two, or when I’d scraped together one paragraph per month until I had something legible:

All I ever needed was treatment for this disease.

Damnit.

Until next time,

Kit

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“When conditions are sufficient, things manifest.”

© a rainbow at night

Here are some of the changes I’ve made within the last.. wow, has all this really only happened within the last two months?

  • Exchanged everything I use on my body for an eco-friendly, recyclable, sustainable, chemical-free and usually organic version. (With the help of Amazon Prime, if you’re wondering.) That’s organic and chemical-free shampoo, conditioner, body lotion, deodorant, powder, lip balm, sunscreen, toothpaste, facial wash, and soaps.
  • Exchanged household items for eco-friendly, recyclable, sustainable, chemical-free versions, that don’t harm the environment. Like dish washing materials, laundry detergent, fabric softener, household cleaners, paper towels, bathroom tissue, facial tissue, drain cleaning, and even tape.
  • Sent everything I had to get rid of to TerraCycle, which offers free recycling programs “for previously non-recyclable, or difficult-to-recycle, waste.” This includes unwanted beauty products, foil-lined granola wrappers, water filters, even cigarette butts and ashes; i.e. lots of things you can’t put in your recycle bin. And they even pay you to ship it to them! Continue reading ““When conditions are sufficient, things manifest.””

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

MTHFR Deficiency Cannot Be Cured, But Treating To Cure is All I’ve Ever Done

Earlier this month I found out I had another new diagnosis, another piece to my chronic illness puzzle.

I found a doctor with experience in the area, and spent three weeks gathering the past 18 months of my medical records and filling out their extensive forms.

And this afternoon, I shredded all of it.

I found out I do, indeed, have the MTHFR gene mutation genetic polymorphism. Two of them, two copies of the C677T mutation, or MTHFR 677 TT, put another way (homozygous). This is not the worst case scenario, which would be one C677T and one A1298C polymorphism. What it does mean–as far as I can tell–is that while people with only one copy of the C677T polymorphism might have mild problems or generally do just fine, people with two copies are at a higher risk for the associated diseases. And it’s a reason why I cannot detox properly. Maybe the reason.

At the biological level, it means my body has trouble converting folic acid–the synthetic, unnatural, manmade form of Folate/B9–into a form that I can use. And because properly converting folic acid is what allows you to properly convert B12 to use, I have trouble there, too. (Or at least, I’m supposed to…?) So because these polymorphisms cause my body to be less efficient, I don’t make enough methylfolate. But you need methylfolate to use folic acid, and you also need methylfolate to use B12 (that is, to convert the common manmade-B12, cyanocobalamin, into the body’s natural, useable-B12, methylcobalamin).

Depending upon how much you randomly know, you may have noticed that says I cannot convert the forms of Folate and B12 that are added to everything, including 99% of vitamin supplements: Folic acid and Cyanocobalamin. They’re in everything because people are supposed to be able to convert them and use them. But I can’t do that very well, so if I consume things that have these, such as in vitamins or enriched foods, I am going to have a build-up of these unusable-to-me forms of vitamins, while never getting adequate amounts of the ones I can use.

This is why taking a multivitamin makes me sick. Even when I was taking my B-complex, I always had to chop them into pieces and only take them a few times per week to avoid sickness. Now, FINALLY, I know why this happens!!

“Folic Acid is Not Methylfolate

“Synthetic folic acid does not exist in the human body. It is found in vitamins, and thanks to the FDA’s wisdom, in enriched flour-based foods (yet another reason to shun flour!).  Multiple enzymatic steps are necessary to convert folic acid into its active form beginning with dihydrofolate reductase in the gut.  Individuals with gene variants, but specifically homozygous C677 should avoid folic acid because of the concern for limited breakdown and subsequent accumulation of this man-made agent. One study has implicated folic acid in suppression of important immune factors called natural killer cells.

Source: Kelly Brogan, MD

All of this is supposed to mean I should have elevated levels of some things and low levels of various other things floating around because I can’t convert them properly… And these excess levels can cause all sorts of problems. But, according to my recent bloodwork–particularly the homocysteine–everything is within normal limits. It’s kind of astonishing, really.

To say I’m appreciative of my body finding ways around this, and making me crave food that would give me what I need, is an understatement. Go body, go! I will help you.


You know what medication makes this worse? Bactrim. This probably helps explain why my liver was fine until I needed Bactrim to finish killing off the bartonella infection. Should I need it again in the future, I will know to take milk thistle or something similar, to offset the effects, BEFORE my body gets too stressed…

And that’s pretty much how I’m going to approach this entire thing. I’m going to learn about it slowly and do what I can do offset the effects–symptom management, palliative care–and let my body continue doing what it can for as long as it can. I may do further research into mild supplementation, but mainly, my outlook is that this is another quirk I get the OPPORTUNITY to manage. Of course I reserve the right to change my mind at any time, but:

I am not going to go into “treatment mode.”

And it took several weeks of lamentation for me to really understand I had that choice, and that it wouldn’t be the same as suicide. As one person put it,

“The media constantly bangs on about how to live. . . They tell you how to preserve your body surgically and chemically so you look younger, slimmer, healthier. Why? Nature is perfect in herself. Every season is beautiful.

To be suicidal is to want to die and take actions to facilitate it. But I want to live. It just so happens that humans are subject to disease and death, and if I continue on the path which I have for the past almost-thirteen years, I will not be able to enjoy my life, the only one I have.

I am going through a whirlwind of emotions with this, and if you think you’re able, you can take the ride with me.

I don’t think I’ve ever been so scared, or happy, in my entire life. To be continued

a rainbow at night


PostScript: I’ve been doing a lot of photography lately in honour of Jeremiah Katches‘ passing, so I’ll be posting some of my pictures at the bottom of my posts. This may be a temporary thing or ongoing (much like life, really), but here you go:

My First Real Post in Months: “Something” Has Happened

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 “real” entry… Anyway.

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

 

After a necessary car ride (read as: hurricane 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 they suppress the immune system… But I’ve been off and on Nasonex (an inhaled corticosteroid for sinus inflammation; 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 had 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 due whatsoever, 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 it was bad. Bad bad. The aura began with an awful prodrome of Alice in Wonderland Syndrome on Friday (Sept 28th) and the Migraine began two days later on Sunday (Sept 30th). Another two days later it was gone, but I have been sicker than sick ever since.

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 a dose of Vicodin. The “headache phase” (because that Migraine went on to irritate every surrounding nerve) has died down for the most part, but now I’m facing exhaustion, flu-like sickness, numbness in my right 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 functioning in the mean time.

So 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

This is an entirely new way of formatting, but…

…it’s the only way for me to get this entry published. I’m basically forcing myself to update. I won’t be making a habit of this, but for now… Purple things about life, black things about health updates (read as: Purple for things that are semi-interesting, black for things that I need to write down lest I forget).

  • June 5th: I started reading American Gods. (So far I’ve made it to chapter four, I think.)
  • June 6th: I got my bloodwork back, showing that my liver enzymes are perfectly normal, back in their 20s and 30s, thanks to the Liver Chi my LLMD put me on! I’m enthralled. If anyone is having trouble with their liver enzymes, and milk thistle isn’t enough, try this stuff! I’ve been on 2 capsules 2-3 times a day, as per doctors orders.
  • June 8th: Spent the day listening to music and watching the rain. If you want to know what it sounded like (AND YOU DO), open and play this and this at the same time (adjusting their individual volumes as desired). Also, decided that one day I will own a professional camera.
  • June 9th: Shaking for most of the day with very visible tremors.
  • June 10th-11th: Muscle fatigue (via M.E.) due to a lot of arm usage in talking/typing to a bunch of amazing people. (It was worth it. ♥) Also very, very sore, with a “I feel like I’ve been run over” type of pain, reminiscent of my fibromyalgia days, but not as severe. I had ordered some very soft clothes that finally arrived, which really helps the burst of peripheral neuropathy I’ve gotten lately. I’m assuming my nerves are trying to heal from whenever these infections had spread to my arms several months back. Fioricet is a HUGE help for neuropathic pain!
  • June 11th: I realized that, over the past.. well, a long time, I can’t remember anymore, but I’ve developed oromandibular dystonia that’s mostly triggered by eating. I hope it is worsening now because of herxing, like my other forms of dystonia did when I began treating bartonella last year, and not because it’s something that’s going to hang around. I have quirks, yes, but it is mainly triggered by me trying to eat and chew, etc. Perhaps there is some kind of sensory trick I can learn to tame it? I have some information about when it may have started thanks to my wonderful tagging system, but I’ll have to sort through that, later.
  • June 12th: My niece made me an acronym poem, something awesome about me for each letter, and left it out for a surprise. Aha. I love being the aunt. ♥ Also, I needed my glasses this day. Most days I am fine and don’t need them indoors, but it was a “blurry-can’t-see-the-tv” day. Does anyone else get that? You just wake up with poor eyesight?
  • June 13th: I felt great, it being a Wednesday and the furthest day from my Thurs-Sun Flagyl pulse. And for the record “great” means being able to breathe when I stand up, and able to walk around. I did some minor cleaning, and even did some laundry!

Yesterday I had my cardiologist appointment. He agrees that the palpitations are probably from the Liver Chi, said to be careful with the ibuprofen since it is also processed by the liver, and to continue getting regular labwork to make sure things stay stable. If anything continues to flare, I should go see him again, but as of now I am good for another five months and I don’t need to repeat any heart function tests until next year. :) He’s sending me to get a urinalysis because I have nocturia that has been worse the past several months. During the day I think I urinate a normal amount, but during the night it gets worse, and we’re not sure why. I also told him about this cough that’s gotten worse the past several weeks, but I forgot what he said! Also, I had the beginnings/continuation of further eye problems, which I want to talk about, more.

My eyes continue to be a bother for me. As I mentioned previously, I’ve been staying in the dark since beginning treatment because it is too painful to be in normal light. Some random days I am okay (like the day it rained, and I was able ot have the window open!) but for the most part, it is me in my dark room with my dim lamp.

As for this recent “episode,” I assume it started on the 12th when I woke up and needed my glasses. Then yesterday, as I was lying on the exam table waiting for the doctor, every time I opened my eyes, the walls were a different colour. Yesteday night, the photophobia started. (I need to make a photophobia tag…) The light from my cellphone, on its lowest setting, was excrutiating. Today it was just as bad.

I have my one window covered completely with layered curtains, and thumbtacks around the edges to keep them completely shut–the only light that enters my room is through the top of them, and I even have a towel over that. Just the few flecks of light that managed to escape through the top of the towel this morning were enough to make me roll back under the blankets in pain. I eventually got up and threw two more towels on it. After several hours in the dark, some ibuprofen, and some coffee, I am much better, hence the typing. According to my tags I’ve had this exact set of symptoms in April of last year (cough included!), and it was when I was (1) on Zithro (read as: Biaxin’s cousin) and (2) having one of my “these are strange symptoms what is going on” phases. So I’m going to assume this is Lyme or Mycoplasma, and just be glad I am on antibiotics to kill both of these beasts. :\ At my next LLMD appointment I want to start A-MYCO from Byron White formulas, too.

…And there we have it!

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 Kit, 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 with Lyme disease has the exact same problems I do (also hypertonia, also brain lesions). 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 sending 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; for another there 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, 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 indulging my creativity to help me cope, so here are a few pieces:

a rainbow at night


PostScript: 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.

Mini-Update on Treating with Flagyl (and a painting)

Let’s see if I can suppress my urge to ramble and post the basics of what’s been happening. I shouldn’t need to go into too much detail because there’s not much more than this that I’ll need to know for future reference.

My insurance covered Tindamax up until January 2012…so they denied me coverage for it. Twice. I didn’t want to stir up trouble or questions, so I told my LLMD not to worry about appealing it again. I instead started on Flagyl. No big deal, right? I’ll just be on a less-effective, more toxic medication, for longer, because of no Tindamax. Regardless, it’s what I have to work with, now! The first week’s pulse brought out a burst of my neuropathy after each dosage, and worse neurological symptoms in general, such as a terrible ptosis of my left eye (it was the worst I’d ever seen it). After that, everything stopped, including my previous symptom progression, and now I actually feel worse on the days I’m not on it…! (This is the last thing I’d expect to feel while on Flagyl!!) But speaking of which…

My routine liver panel has revealed my enzymes are high. Now, they’re just a few points above the normal range. But when my usual, pre-antibiotic numbers (or pre-Bactrim, I should say, since that’s what made them start rising) are in the high teens, and now they’re in high forties and fifties, that’s triple what is normal for me. My LLMD is on vacation right now (which he really does deserve, but goodness, out of all times for me to need him!) so I can only imagine what he’d tell me to do. Which is take a two week break and get the enzymes within normal range before continuing. An LLNP online thought it’d also be a good idea to break. So I upped my Milk Thistle to three times a day and stopped everything but my vitamins, and hopefully within 2-3 weeks I’ll be able to start this Minocycline in concurrence with Flagyl.

My left sided twitching has been flaring the past week. It hasn’t gotten to full-blown-dystonia level, yet. I had my “three weeks of headaches” end, then a 4-5 day flare up with the Lyme flare, and I’ve since been fine, with no headachess for about a week. I can’t think of any other remarkable symptom stuff… Oh! But my heart functioning is the same as last time, says my echocardiogram from last week. :)

And last, but not least, my site (if you haven’t noticed) is now arainbowatnight.com! :D

  a rainbow at night

Cardiologist Appointment

When I got there he started by asking how I was feeling since last time. I said “good” and he said I looked well. I was very pleased to show him I was out of the wheelchair.  Then the results came.

So, I still have the valve insufficiency. (This is not the same as mitral valve prolapse, just to be clear.) The primary issue is mitral valve insufficiency, but I also have pulmonic and triscuspid insufficiency; the latter are always “trace to mild” and haven’t changed in two years.

The other thing is that my heart function was decreased. He said it was at the lowest end of the spectrum to still be considered normal; my left ventricular function measured as “low normal.” I’ve always been over the base 55%, but this time it was at 55%, so he wants to watch it.

I apparently have a new heart murmur in the mitral valve. Perhaps this happened after the recent flea incident, during those three weeks I had chest pain and worsened symptoms? Oh, and I had wheezing in my lungs, no doubt the result of whatever caused me to be coughing those three weeks. By the time I got to the visit, my cough had stopped, though. He said I can expect a worsening of all this when going through things like infections and physical stressors.

He asked if I had any symptoms such as swelling in my feet or ankles, shortness of breath, fast heart beat, coughing, and frequent urination, specifically waking in the middle of the night to urinate. My answer was yes to everything. He didn’t mention that these are all symptoms of heart failure, but it’s me, and of course I know that. All of these things will happen if I’m not careful, but with my adaptations I’m usually able to avoid them, which he suggested I continued doing. I told him about having a lot of trouble breathing when I lie down, which he noted, and said to come back sooner than our scheduled 6 month check up if it starts waking me up at night. Strangely, he also asked if I had nausea, so that must have some related thing, as well? I spontaneously get nauseated for any number of reasons, but, doesn’t everyone?

Then we talked about my arrhythimias–they are there, but just didn’t occur very frequently! (If you recall, my symptoms had actually started to resolve by the time I wore the event moniter, ahaha.) Which makes more sense to me than the previous declaration of “it was just tachycardia.” He actually took the time to explain and show me the event monitor results sheet, and point out where the beats were messed up. Many times, the sheet said something to the effect of not being able to show the abnormality because of the heartbeat was too fast? How is that even possible? Anyway.

He just wants to monitor me, I guess to see at what rate things will progress. There’s not much that can really be done right now, besides what I already do. I’m treating the infections, I take CoQ-10 and L-carnitine daily for my muscles, so I hope things will delay themselves for as long as possible.

What I didn’t mention to him, is that the hearts of people with myalgic encephalomyelitis have decreased cardiac output the day after exertion. It’s one of the few ways you can actually prove our disability: We are in clinical heart failure the day after we exert. If I had thoroughly exhausted myself the day before the test, I could have SHOCKED this poor man with how much it could fail! But, I couldn’t mention it at the risk of him then disregarding the decrease and not wanting further followup, as I’m not about to just assume–as incredibly likely as it is–that’s all it was. But I had a doctor visit the day before I did the echocardiogram, so this was most likely what caused the decrease in heart function. For the next test, should I rest up the day before to see how I fair on a “normal” day? Or let loose and allow people to actually SEE what my muscles do after exertion?

Other than that, I got the results of my bloodwork and yes, my eosinophils are indeed elevated again. But good news is, I haven’t had any more random hives or allergy symptoms, so hopefully they’re on the decrease now that I’ve got the Bactrim. I’m also anemic again, which, coupled with the eosinophilia, is exactly what my bloodwork looked like when I got the fleabites the first time. Hopefully things will even out. My cardiologist said at least there wasn’t a raging infection that would put me in imminent, immediate danger. My white cell count was good! In the 30s! It used to stay in the 20s for several years, but lately it’s been pretty stable, and that’s good. :)

Basically: Bloodwork reflects hopefully-resolving infection, fleas did a number on me but I’m okay, and as usual, we’ll monitor my heart problems, which are minor as long as I stay within my limits.

a rainbow at night

Is this some form of optic neuritis? Also, lots of improvements!

My eyes hurt. My eyes hurt a lot, behind the sockets, but mostly when I move them… Well, try to move them, because I really can’t due to the pain, and specifically, it’s just my right eye. I’m also terribly photosensitive but that should be a given, right? (Sunglasses are your friend. So is the screen brightness adjustor on your computer.) I haven’t had this happened in months; it used to occur minorly as a bartonella symptom. But I don’t know WHAT this is, because it’s never been this severe nor lasted as long. It only responds to high doses of ibuprofen–not even entire Vicodin pills (I only ever need half at a time) give me any relief. This is the third day of it, and it’s starting to finally ease up. Yesterday the front of my skull also hurt, and now I have some type of headache in my neck, but that might be unrelated since the middle of the week is approaching (middle-week blues!). I’m very glad to be switching antibiotics!

I don’t get to say this often, so let me mention: Besides the at-times-excruciating eye pain, I have felt fabulous. We are finally in our new home and instead of being housebound I have been walking unassisted and moving boxes, and.. ha! Probably overdoing it a little, but I’m willing to pay the consequences this time. The only difference is I’m only on Rifampin because I had to stop the Zithro; unfortunately you can’t just take Rifampin because it creates bacteria resistance. This has only been for two days, to let the azithromycin clear out of my system because I had to start Bactrim today, and I didn’t want them to mess with my QT interval.

After some rescheduling confusion, I spoke with my LLMD this past Wednesday. Apparently his nurses had told him my results, and sent them to me, but he never got to look at them! This happened at his first office, too, when his staff said my Mycoplasma pneumoniae was negative and it wasn’t. (He needs new nurses.) But anyway! He confirmed that my bartonella result is positive. We’re not sure about the ehrlichiosis, as far a what my results showed before I got all the new flea bites; I get the idea he’s not too used to dealing with it though he knows that fleas are a big transmitter and how to treat it. He’s not certain what’s causing my flare-up every seven days, but suspects bartonella. He also said bartonella can cause the spots on my feet (I hope “that’s all” it is), and he’s not too concerned with retesting me because of me already being on the right treatments. I’m fine with that. He was unsure of whether it was my old infection was flaring, or the result of something I caught via those new fleas, but the conversation mainly became, what can we do to kill it now that it’s showing itself?

First I was going to start Cipro. But I have at least four contraindications: severe muscle weakness similar to myasthenia gravis (and I’m not completely certain I don’t have that, not until I get tested a second time this November to be sure), CNS lesions, chronically low or borderline potassium, and arrhythmia related to QT internal. So instead, we’re putting the Lyme treatment on hold for a few months and targetting the bartonella on its own, with Bactrim, to hopefully kick it out completely. So we’re dropping the Zithro, then in addition to the Rifampin I’ll also be on Bactrim. I took my first dose tonight and I feel okay, save the normal things. I hope I don’t herx too bad! The Lyme shouldn’t have enough time (just three replication cycles) to gain any momentum before I start something to start killing that, in January. That will be one year of bartonella treatment! From there I can hopefully just be on some type of maintenance dose?

Also, a current milestone is that this is the longest consecutive time I’ve stayed out of a hospital in three years! It’s been nine months since I last went! There were some close calls, especially two months ago, but I made it through and I’m setting a new record. ;)

AND EVEN MORE GOOD NEWS. I am now almost at the healthy weight I was before these infections relapsed roughly two years ago. I have gained seven more pounds, and have three more to go! This is not only great, but security, because if I ever do end up severely ill and lose weight, it won’t automatically be dangerous.

I think if the Bactrim dosen’t herx me too severely, I should be able to drive within another month. But we’ll see. ;D

Well, that’s all for now. I’m going to the theatre tomorrow!

a rainbow at night

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 Ehrlichiosis (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. There wasn’t a specific Rickettsial infection test, 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 Ehrlichliosis/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 primary immunodeficiency (PIDD, the reason most of my tests don’t show positive, because I don’t produce an adequate antibody response). Which means, if I weren’t immunodeficient, the scores would have been higher, theoretically high enough to surpass the “borderline” category. Or at least, my bartonella result would be. Regardless of anything, I do have the antibodies to this bacteria. 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 and thus be “borderline positive,” 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? Again, I was tested for E. chaffeensis, so if I was tested specifically for Rickettsial 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! Because:

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, which prompted my doctor to start me on treatment… 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–from which I acquired it–can carry up to five different species of bartonella.) Speaking of that, 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 Ehrlichiosis or 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. and PIDD. 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. 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 the rate of inaccuracy is very high. And I haven’t even talked about how the bacteria themselves evade and suppress your immune response, causing false negatives. There is a reason Lyme disease is the fastest spreading infectious disease in the United States.

If you’ve ever been diagnosed with Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s Disease or Motor Neuron Disease), Parkinson’s Disease, Rheumatoid Arthritis (RA), Lupus, Chronic Fatigue Syndrome (CFS), or Fibromyalgia (FM or FMS), please find a Lyme Literate Medical Doctor (LLMD), the people who risk their lives to stand up to the infectious disease society and treat people who are dying. Or at the very least, someone else who completely understands 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, et cetera.

And even if you have M.E., you still need to be tested, because we are susceptible 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 or feral cats!–that are considered high risk for the immunocompromised.) Lyme disease can also cause false positives on autoimmune tests (such as ANA and ESR), so even having “confirmation” such as that is no cause to think your diagnosis is accurate.

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 addressed.

a rainbow at night

No more oxygen machine! (Improvements and Symptom Recap)

I know not if it’s to do with this recent bout of occipital neuralgia (that left me completely by Monday), but my eyes are having a lot of problems ever since. Last night I had to go to the restroom, turned on the light, and started shaking from the pain it caused to shoot through my body. I’m always sensitive to lights but that.. that was something else entirely.

I’ve managed to keep some type of headache–whether it’s remnants from the nerve irritation I’m not sure–even when the majority of the skull-splitting pain has left. I’ve been seeing things. Lots of things. Shadows, bugs, black specks, colorful spots, dancing zigzags. I distinctly remember mentioning this in my video post from earlier this year, so I know it hasn’t been that long since these have flared up. I usually associated these symptoms with bartonella becuase it was when I got that infection (though unbenounced to me at the time) that I began to “see things” all the time.

As far as the bart goes, I’m not sure of my last flare besides around the 14th. Yesterday I was plagued by severe muscle spasms, there were the eye problems (they hurt so much upon moving them, even just to look around), and that night I had another terrible headache that was focused in the front of my head… Then today woke up very moody, nauseated, and no appetite… And by this evening all of that has gone away. Sounds typical bartonella-ish to me, particularly the muscle spasming, eye-related symptoms, and headache.

Other notable, strange symptoms are the heat sensations in my feet, and the facial grimacing…. Though, to clarify, it’s not as much a grimace as the muscles in the left side of my face just tend to go downward. I’m just not sure what else to call that? I think I had a worser cough yesterday as well. I mentioned my throat having inflammation and sores a few posts ago, and I’ve had a lot of throat pain focused around the lymph nodes the past two days. I take ibuprofen for this and it helps a lot, for the pain and for just about everything else.

I’ve been feeling better as far as fatigue and dizziness goes. I’m unsure of where those several weeks of dizziness came from, but… I’ve also been walking more! And today..  today! Today, at one point, I got out of bed and stood up and walked to get something. That’s from lying down, to walking, and I didn’t pass out. Now, at other parts of the day I attempted this, and let’s just say I was lucky my bed was behind me… But the fact that I was able to do this at all, is a great thing!

During my walking, my left leg begins to go dystonic, and that’s actually more of a hinderance than my blood pressure, lately. I’m unsure if it’s due to nerve damage or perhaps a minute oxygen imbalance because of me standing, that’s producing the dystonia there. It was one of the first places to get the symptom–even when low oyxgen wasn’t a problem for me–so perhaps it will be the last to leave?

Also, tomorrow the pharmacy is coming to pick up my oxygen machine as I haven’t needed it in two months! I ma so excited! :D I hope to never need it again. Next step: Get out of wheelchair, dare say I, completely?

I’ve been remembering to take my ubiquinol and olive leaf extract. That’s.. very important. Bad things happen when I forget them. You’d think after all these years I’d have learnt that by now, but… When the Lyme-brainfog caught up with me, I was forgetting things left and right. I think I’ll do another month of these low dose antibiotics and then in June, talk to my LLMD about moving up the dosages.

Oh, did I mention? I was tested for B12, B6, B1, and Zinc deficiency. All normal. And they YET AGAIN tried to get my Lyme and bartonella titres, but of course, nothing turned up, because I just don’t “do” antibodies. But! I’ve met my insurance deductible, so now I can get tested with IGeneX again! I’m excited to see if even more bands will show up this time. The first time I only had one band; the second I had five. I wonder what will pop up now, especially being on a cyst buster (Rifampin) that has released a lot of my initial Lyme symptoms? (That means the bacteria are active, which hopefully means my body will create at least a weak response to them, enough to be picked up by IGeneX labs.) This time I’m also going to do their Bartonella FISH test, their Babesia FISH test, and the PCR test for Ehrlichia and Rickettsia (the latter of which I truly think I have sometimes, due to the rash that was on my feet for two years). All I have to do is.. call and order the test kit! Which I should probably do tomorrow, hmm?

a rainbow at night

A neurologist visit, and autonomic neuropathy.

Monday was very stressful, for me and half of the country. There were storms and tornado scares. The only reason I’m mentioning is because the resulting relapse from the adrenaline surge of just barely avoiding having to run for safety has sent my body reeling. I began paying the price for it yesterday… But, at least there is still a house to pay the price in; some of the surrounding homes weren’t so lucky.

After my neurologist’s appointment, I was sicker than sicker than sick. The dizziness has been incredible. My right eye began twitching and I got a massive headache that persisted even after vicodin and ibuprofen. It’s been with me today as well, which must be something of significance because I can’t remember the last time my eye twitched.

But my new neurologist is simply fabulous.

  • He listened to what I had to say.
  • He asked questions to better understand what I was getting at.
  • He did a full neurological exam (which I’ve NEVER had before, if you can believe it).
  • He didn’t tell me I was crazy or just over-reacting.
  • He didn’t scoff when I told him about acquiring Myalgic Encephalomyelitis and Lyme disease.
  • He was actually HELPFUL and offered me HELPFUL tests and rehabilitation.

And most importantly, he was able to take the time to explain to both my mother and myself what was probably going on. He didn’t get exhausted with me, and he’s going to be my primary neurologist! I see him again in four months. :)

I feel so great about going…even though I didn’t want to. I just figured, if three different doctors told me to see him, I should probably just take the “hint” and go. He said he gets a lot of the complicated cases, and surprisingly (or maybe not-so-surprisingly) a lot of his complicated cases get better on antibiotics than they do on steroids. Hmmm…!

As for what he found:

He says I have some neuropathy in my limbs, and the reflexes in my legs were blunted. He was actually able to stand in front of me while doing the knee jerk reflex test. He also talked about cranial neuropathies, and said he can see the remnants of the Bell’s palsy in my face. He says he’s not sure if it will go away or not, but if I get out of this mess with “only” a crooked smile, I think that’d be fine with me.

And I didn’t prompt him at all, I swear, but I ultimately asked him, what about the numbness episodes that are associated with my digestion? And he started talking about the vagus nerve and autonomic dysfunction. Insert me having to hold back my shock, here.

He explained how the vagus nerve controls the things like heart rate and blood pressure and the digestive process, and.. all the other random things I’ve already mentioned here. And guess what, people. The vagus nerve is what initiates the swallowing reflex! And he thinks other cranial nerves are involved in this (my face and tongue going numb) because of my initial presentation with Bell’s palsy, signifying the infections are obviously attacking there…

So, basically? I have autonomic neuropathy. Everything that I thought was happening? It’s actually happening. The cause of these “episodes” I’ve been having really is a form of dysautonomia. The doxycycline really did initiate my the vagus nerve issues just like it did the first time, pushing me into that incredible herx where I couldn’t eat and couldn’t swallow and had a nervous system meltdown from it trying to kill the bacteria that have thoroughly engrossed themselves in my nerves… It’s really clear why everything else–my migraine triggers, response to caffeine–is just so hypersensitive right now. He likened my nervous system to that of an infant’s, learning to regrow and rewire itself in the appropriate ways… I just hope it doesn’t miswire.

He wanted me to have spinal tap done to see if the Lyme would show up. I told him how it doesn’t show up, and in fact is even less likely to show up there than in the blood, but he seemed to think it “should” show up anyway, and also wanted to see how much nervous system inflammation there was… But honestly, I don’t see a point in doing this invasive procedure, when it has only a 13% chance of showing Lyme disease, and my insurance can use that against me to deny me my medication. So, no lumbar puncture.

My B12 levels are fine–they tested me in the hospital. *sigh* I sort of wish they’d have been off, because then I could do something to help my body! But he’s testing me for a B1 deficiency because he said sometimes it can cause the same type of lesion on my brain. Ah, and about that: He said that at least it’s a stable lesion (i.e., not changing) and though he could easily blame my new problems on it, he doesn’t think it’s to blame because it’s been there since at least 2009.

In the end, he said to continue on my antibiotics because they were helping me, though he did hope I would’t have to be on them indefinitely. He’s giving me a referral for neuropsychiatric testing to better understand what type of cognitive dysfunction I’m having. He didn’t want to do it in office because I seemed so alert, and basic testing (“remember these three items in the correct order…”) wouldn’t have shown anything. Also, he wants me to try memory training to see if it will help… I’m not sure how that will work with having M.E., but I figure it can’t hurt? I mean, unless it does hurt me somehow, then I’ll stop going, but it might be good to make sure my brain follows the right path in its healing. (It’s ironic, though, because as my treatment progresses, my cognition will improve anyway, ha.)

Tomorrow I see my cardiologist again to get this holter moniter off of me, and we’ll see when I’m to go to the rehabilitation clinic to analyze how my brain is functioning.

And there you have it!

a rainbow at night

Things are going good.

I haven’t been updating! Let’s fix that.

The 300mg daily dose of Rifampin is MUCH easier on me. I read somewhere (i.e., don’t quote me) that Rifampin strengthens the power of other antibiotics… So maybe that’s why I can handle the 600mg until anything is added to it? Regardless, I’m still herxing (some days the fatigue is fall-out-of-your-wheelchair unbearable!), but I’m not deathly ill or thinking I might need to run to the hospital once-a-week, like before.

Since that last migraine I haven’t had another, or even near another. For a while I thought the Topamax was causing me to wake up 4-5 times per night (though I still dream/reach REM-stage sleep, so this isn’t like Fibromyalgia), so I started taking it in the mornings. It still happened, so I think I’ve ruled that out. I’m still waking up several times a night, though. My experience with Topamax has been:

  • 1st week – Still lots of Migraines
  • 2nd week – Migraine “bursts” and auras
  • 3rd week – No more Migraines

Except when I introduce a trigger, of course. I like this medicine!

Yesterday was pretty bad as far as mental symptoms go, and it started the night before. I was very cynical and just generally.. foul. I kept distracted and didn’t ruin any relationships this time, aha. Last night my mentality became better and it still is as of today.

About two nights ago I woke up having a lot of trouble breathing. It was difficult to initiate swallowing again, I was short of breath, my tongue was numb, and my limbs were tingling and numb. That was about it, and it went on for about two hours… I wasn’t too unnerved, because I stupidly (yes, stupidly) ate a small meal right before I went to bed! Gah! But it was unusual, because for the past several days prior, I hadn’t had any dysautonomia problems. I’ve been splitting up my meals and eating them in small portions as to not divert too much blood flow, and up until then, it had been working.

Then this morning… I’ve woken up with slighly dropping left face, a numb & tingling left hand, and a numb & tingling left foot. I am incredibly dizzy. I’ve been awake an hour and a half and none of it has let up any. I assume I’m digesting something or another, because my right side is also experiencing numbness, but it’s not as constant as my left side. I actually fell over this morning (onto my bed, thank God!) because I couldn’t feel the toes on my left foot! Hopefully this will let up once the digestion stops…

Ah well. Time for the good news! Despite this being a usual Lyme flare period, my symptoms aren’t severe at all! No heat sensations in my left foot, and I haven’t even had the usual heart palpitations that occur! I did have upper spine pain, and a mildly severe headache (haha, and by “mildy severe” I mean a short burst of terrible pain that went away after about twenty minutes), but.. for the most part, things are lessened. (My bartonella flares have been milder, too, which is why yesterday’s snuck up on me. Normal 99.2 temp. I was also coughing a lot yesterday? Not sure if that’s signifcant. My feet started hurting the night the mental stuff began.) The only problem here, is that if I’m not having any arrhythmia, the holter moniter will have nothing to show! Ahaha. Oh, the irony. So I’m ditching my calcium and magnesium for the next five days in case it might help spark something; I’ll start it again before things get risky. I just hate the idea of wearing this thing for two weeks and it NOT showing anything!

Other good things are, I’m out of my wheelchair a lot more! I can usually go get the minor things I need, such as bottles of water or Ensure drinks, except for when.. you know, I can’t. And I still haven’t needed any oxygen supplementation. And after seeing my allergist/immunologist I found, I still have no allergies! Not a one! =) Part of me wonders how on earth I’ve avoided that… But nonetheless, I have, and it’s great. I was very short of breath in her office, and my toes turned blue (soon to be feet, if I hadn’t caught it), but propping them up on the exam table helped that, and my breathing, haha. Also, I’m able to type more now, but of course still experience the delayed muscle relapse. Baby steps!

 

a rainbow at night

Three ER Visits and a Hospital Stay: What Happened

In case anyone was wondering why I haven’t been around, it’s because I’ve been in the hospital. If you’re on my Facebook or Twitter then you already know this. I went to ER three times in less than 24 hours, so they eventually kept me. I was there from Sunday night (Feb 27th) to Friday (Mar 4th) from these “episodes” that acted like seizures, but weren’t. The antibiotics didn’t technically cause it, i.e. it wasn’t an adverse reaction, but the medicine killing the bacteria definitely woke something up, so everything entered into a sort of revolt and my body–particularly my nervous system–could not cope. I talked to my LLMD from the hospital, and he told me to stop all Rifampin and Doxy for two weeks, only using the Doxy to avoid another emergency room trip. (You cannot stop bartonella treatment “cold turkey” because THAT can land you in the hospital, as it has for me in the past.)

My body has been fighting a lot of things these past two weeks. In addition to what I already had, my labs suggested an unidentified virus lurking, for which I can do nothing right now; I’m anemic because of the infections that I can’t treat; my blood sugar has been high (because of stress reaction I think);  and I haven’t been absorbing proper nutrition OR essential vitamins, yet I’ve also been unable to handle my nutritional shakes, so it seems inevitable that I will lose more weight. When everything else went south, my liver decided it couldn’t deal with my antibiotics, either. However my body also cannot cope withOUT the antibiotics either, since bartonella comes back with a fierce vengence in a very small amount of time, so I may very likely end up in the hospital this weekend if things take a wrong turn. All I can do is pulse the Doxy on Saturday and Sunday, and hope for the best. I’ve officially run into a treatment failure, despite us being so careful to avoid it. I’ve been very, very ill and unable to handle ANY of my medicine, even my herbs. Things got.. pretty bad.

You know, I really should be more specific in my prayers. Like, instead of asking to “make it to Saturday” without an ER visit, I probably should have extended that to the whole weekend! Because leave it to me to feel in the clear on Saturday, and then end up in the hospital on Sunday!

I guess it all started Saturday evening/night, February 26th. I watched a lot of TV, including two movies without pause, which doesn’t sound like much, but for someone with M.E., watching four-five hours of straight television and actually paying attention? That’s a lot of energy. Too bad it doesn’t affect me then and there. It was fun, and worth it, but I should have rested after that. I didn’t.

So the next day a lot of bad things came together:

  1. The relapse from the previous night began hitting me.
  2. Doxycycline takes 10 days to build up to its highest levels in your nervous system, and it was day ten.
  3. I had a small argument with my mother which stressed me out further and I am not supposed to get stressed out.
  4. I overexerted further: I just wanted to lie down in the living room and watch two movies with my family… I didn’t think it’d get me as sick as it did.

So by 7pm Sunday, I was sick as a dog (why do people say that?), herxing severely, having a Migraine, and I guess my nervous system just.. had enough. I had been having severe tremors all day, but then my muscles began spasming and going numb interchangeably. I went to my mother’s room for safety. She looked at me and immediately started making a list of my current medications for the hospital staff. (Mother-premonition?) I then proceeded to have this seizure-like episode of my limbs going numb, my tongue going numb, an inability to swallow (though I could breathe all right), and uncontrollable convulsions. My stomach felt this “rising” sensation and my speech was slurred whenever I did try to talk. This happened three times between Sunday night and Monday evening, so by the third ambulance trip, and me failing the Pronator Drift test (a neuro test, indicating a upper motor neuron lesion) they kept me.

“It” proceeded to happen again that night, twice on Tuesday, and once on Wednesday. I was discharged from the hospital Friday morning (4th) and I had a minor attack that evening. Then another minor attack on Monday, and one on Tuesday (the 8th). They were getting less severe and.. more Migraine-like than seizure-like, but then I had another bad attack two days ago on Wednesday, complete with a few minutes of convulsions. :\ But for the most part, instead of full-on convulsions I get some muscle twitching, and the “main event” is now a tingling sensation in my stomach and chest, abrupt numbness of my arms, neck, face, jaw, tongue, all mostly on the right side, and sudden slurred speech. (I still suspect some nerve around there is really messed up, perhaps that vagus nerve that has been giving me so much trouble recently.)

There are some very odd happenings that make it nearly impossible to find the true cause. I’m not sure there is just one, really. The first time it happened after drinking an Ensure; the second after taking Rifampin; the third after eating a hamburger; the fourth after eating again; the fifth after an Ensure; the sixth-thru-whatever numbers were correlated with either Ensure drinks or Migraines. In fact I’ve had a Migraine on.. Sunday (Feb 27th), Tuesday, Thursday, Tuesday (Mar 8th), and yesterday. Also, during the first three episodes, I really, really had to pee before it happened. Like, an abnormal amount, but I wasn’t drinking that much, so it didn’t make any sense. Nothing makes any sense, besides my nervous system just went into some type of overload/failure. I’m sure the exertion worsened it, as did the antibiotics/herxing, and for a time I developed the same sensitivity to Ensure as I have to daily multivitamins. I cannot take vitamins because they cause this unusual, terrible reaction where I become in a paralytic-like state for about 8 hours. And because of the number of times this happened shortly after drinking an Ensure–even though I’ve been drinking them for weeks and it helped me stop losing weight–it looks like I’m having a similar reaction to the nutrition in them, after a certain point. But why it happened after I ate? I have no idea. And why did I have to pee so badly before them? What the hell?

I’ve had intermittent arm numbness since I started antibiotics, which I’ve mentioned on here repeatedly. (And oddly enough, it was in conjuction or following severe headaches, remember? They didn’t seem like Migraines at the time, but now, I wonder…) So the antibiotics woke something up, I guess. And I also mentioned here, I’ve had increasing trouble swallowing for the past four weeks, which made it impossible to eat a lot of things. It cumulated into a full inability to initiate swallowing last Tuesday, and it was pretty scary for a while. I didn’t want to end up with a feeding tube. :( Other things of possible note are my more frequent arrhythmias and tachycardia, which annoyingly never happened during any of the three times they checked my heart rhythms! But they did run a LOT of tests of me, over twenty-five. Included was an EEG, and the results would insinuate I’m not having seizures, but the sad part is, you can still have seizures and have a normal test result. :\ So. Yeah. They ultimately found:

  • I have a rotated kidney! This has been present since birth and poses me no problem.
  • I now have moderate mitral regurgitation in my heart.
  • A spot on my brain, which made me very, very angry.

Because I’ve had three MRIs in the past two years. Three MRIs. I’ve had this lesion in my brain during the last THREE scans of my brain, and no one said anything about it! It wasn’t on my 2003 MRI, but it’s been there since at least 2009, and has gotten “minimally more prominent.” I got Lyme in 2006, and both Bartonella and Mycoplasma in 2008 (when my neuro symptoms really took off) so my best assumption is, they did it.

But speaking of brains, they had me see a shrink to make sure I wasn’t just causing these problems out of anxiety. And I can’t really blame them–my doctor mainly wanted to make sure anxiety wasn’t worsening my problems–because truly my symptoms were very anxiety-like; if I didn’t know me, I would have made the same assumption. But as you can imagine, the results of that were, “She’s sane,” which is the SECOND time I’ve had to see a psychologist to prove to my doctors I’m not just a stressed out female… So maybe now they’ll leave that alone?! An interesting fact, though: The psychologist knew what Rifampin was because he has two other patients who have been off and on antibiotics for Lyme and coinfections. You know, in this state where I live, where Lyme supposedly doesn’t exist? Just like the two patients my infectious disease doctor treated here? Yeah…

The area of my brain with the lesion is the Pons, which is part of the Brain Stem. All of your brain is important but that.. is.. very important. It’s the part that allows communication between the your brain and spinal cord, i.e., any signal your body gets or receives has to pass through it. Wiki says the Pons is about 2.5cm in length, so the fact that this “spot” I have is 1cm itself… A little frightening, that. It could have been caused by a particularly bad Migraine, but.. then why is it getting any bigger at all? Or if it’s demyelination caused by an infection, it’ll just be there forever. If it’s actually a Lyme cyst, it could disappear with antibiotic treatment, because it’s not nerve damage as much as it is a bundle of bacteria that appears as a lesion on an MRI. The worse case scenario is that these infections have triggered multiple sclerosis (MS), which Lyme, Bartonella, and Mycoplasma pneumoniae are all capable of doing. And truth be told, the spot is more MS-like than Lyme-like. But. That scenario seems less likely, because MS doesn’t improve on antibiotics; I did.

As for the valve regurgitation… Well, I guess I expected as much. MVR generally gets worse over time, so it’s a little scary that it went from mild to moderate in just a year and a half, but… I guess when you look at what’s currently happening, and also with me being unable to treat the bartonella for almost a year (bartonella really likes the heart), it’s not that shocking. As if having M.E. wasn’t enough of a predisposition to heart failure, this does not help.

I’ve been working on this entry since Tuesday, so maybe in another few days (hopefully sooner!) I’ll try to make a post about what’s happening now. Until then, wish me luck with my antibiotic pulse, that it’s enough to keep me from the ER! I’m sure they’re very sick of me by now!

a rainbow at night

[Note, Nov 17, 2011: Further developments as to what happened can be found in subsequent posts, or by clicking the “pings” (posts where I referenced this one) below. These attacks were eventually proven to be neuropathy of my vagus nerve.]

I have wonderful news to report!

Today I got the results of my yeast culture, and it shows that there is indeed no more candida overgrowth! First, a moment of joy: YAAAY!!!

This means that I can restart my antibiotic therapy, finally. I have an appointment with my LLMD next Wednesday.

We initially were getting the yeast culture to prove that it was still there, not that it was gone. Because after the Sporanox I still had remnants and still required Nystatin for its maintenance, which was unbelievable. But as I stated in this entry, after being on high-dose Vitamin C for a week (and probably the fact that Sporanox continues working for a few days after you stop it; I should think that had something to do with it, too), by the time I got to the doctor to get the culture, there wasn’t anything left to culture! So instead of waiting for the results to prove it was there, I’ve been waiting on them to prove that it wasn’t. And it wasn’t! So this confirms that I can resume antibiotics without worrying about a candida problem!

I’m sure this will be very confusing to the doctors who were waiting for this to confirm the presence of yeast that I’ve complained about for the past year. It was admittedly a very awkward time to have improvement, and I’m a little peeved that I didn’t get the culture done earlier to prove to them that I wasn’t just making it up, or whatnot. (Having misunderstood illnesses such as these means you get accused of that more often than one should.) But I figure if they want to know the full story about why it ultimately came back negative for candida growth (if I have to see any of them again, that is), I’ll just have to explain what happened. Then I imagine they’d be happy for me, too, once they know. But I bet my primary physician is going “What the heck?” at the results! Because on the day I took the test, I was too ill to be bothered with speaking, which meant no energy to explain how the Vitamin C was helping so much… So she’s sort-of in the dark about all of this. Ah, well. I’ll see her soon enough!

a rainbow at night

Christmas, symptoms, and recovery

So much is expected of Christmas posts when you have a publicized “problem.” Everyone is curious about how you coped, or how things were altered because of it. As an advocate for the very misunderstood illnesses I live with, perhaps some might expect me to explain all that I wasn’t able to do–to drive home the message of just how bad these illnesses are–like many others write about. Maybe it could raise awareness to the fact that very little is being done to stop it from happening to your children, or your best friend, or even you? Like a TV commercial for the ASPCA about all the animals that are freezing to death while yours are inside, warm, I see a lot of these types of things related to M.E. and Lyme disease around this time of year. Such as “humorous” Christmas song rewrites, changing the words to suit the various symptoms of the disease. (While everyone else if off doing those things, I’m doing this…)

I can’t think badly of anyone using this time of year for these purposes. I know why people make those posts, and I know the reason why some find a strange sort of comfort in them… But I don’t.

Perhaps I owe it to realizing how bad things could be given my situation, and thus appreciating how they aren’t. Perhaps I owe it to being reminded daily of how special the little things are, or that I consciously think about the beautiful little things even when things are going better than usual. Or maybe I’m just naive and give the able-bodied too much credit for understanding that these diseases do alter every single aspect of how we celebrate any special event, without me having to bring attention to that fact over and over again… Do people realize? Maybe I give others too much credit for knowing that.

Sorry if I’m not fulfilling my “sick person” duty, but my Christmas was wonderful. I feel like I was given a sort of early Christmas gift, even. First off, I was home and not in the hospital (and, um, alive), and I’m making slow but steady improvement. But also, my candidiasis problem is gone… Like, completely. So I could eat whatever I wanted, enjoy the holiday cookies, et cetera. No more food restrictions. No more feeling like the next thing I eat could upset whatever delicate balance my body was striving–and consistently failing–to attain.

Now, granted, I’ll still be eating like a diabetic because it’s just healthier no matter how you look at it, but it’s nice knowing I can eat a normal cookie every now and then and it won’t cause long-lasting harm. ♥ Now I simply continue maintainence therapy, consisting of alternating Nystatin and Candex every week, to keep things staying normal. Next month I should be able to resume antibiotics, after the candida culture results come back.

I’ve also made friends with my wheelchair, now. It was difficult for my family and I to witness “the first wheelchair trip,” but after the whole hospital thing, instead of it being a symbol of how bad things had gotten, it was a great thing to be wheeling me out of my room! An “Oh look, she’s good enough for a wheelchair ride to the kitchen!” sort of thing. So now we’ve pretty much become accustomed to it, taking me to the living room for tea or whatnot. My niece thinks it’s hilarious the way I move my feet “like a mouse” when scooting myself across the kitchen…

I’m still battling my stubbornness, though. Sometimes I get stuck in the kitchen or the living room because I misjudged my ability levels, which somehow makes me feel like I’ve failed, because they’re just.. what, twelve meters away? I don’t want to think I need help walking forty feet, and it’s so much easier to walk there than to maneuver the wheelchair about, or ask someone to take me there… Especially when I could have done it half-an-hour ago, but suddenly I can’t? How does one keep up with this perpetual flux? But I’ll learn. I’m bound to get stuck many more times, but I’ll learn. And hopefully I’ll do it before I harm myself, because nothing would make me feel more dumb than being sick actually because of something I did (or didn’t do).

As of yesterday I feel I’ve recovered enough from the hospital ordeal, so I started my daily herb and supplement regimen. Which would be:

  • Olive leaf extract, 500 mg twice a day
  • Vitamin C, 1 gram twice a day
  • Aloe vera gel, twice a day
  • Ubiquinol (active form of Co Q-10), 100 mg daily
  • L-carnitine fumurate, 1,000 mg daily
  • Vitamin D3 (I’m not deficient yet, but I get no sunlight), daily
  • Calcium, magnesium, and zinc combination supplement, daily

I started the ubiquinol (instead of ubiquinone, for now) and L-carnitine on Christmas because of all the activity. Needless to say, it’s been very helpful, though of course it doesn’t mean the crash still won’t happen. Anything else I take depends upon the day, such as the Candex, Nystatin, or grapefruit seed extract. I’m going to add the houttuynia back later, but I wanted to trial run everything else before I start attacking the bartonella again. Speaking of: My bart symptoms are still–perhaps even increasingly so–very mild… I’m wondering if I should be happy they’re lessening, or scared that they may jump out at me again when I treat the Lyme disease. It’s anyone’s guess, but my family and friends do appreciate me not yelling at them quite so much in bartonella-induced rages! Anyway…

As for how I’ve been feeling since my last update (besides the obviously expected things): For several days after “the hospital incident,” I was extremely dizzy, to a ridiculous level. It’s an unnerving dizziness that feels like it’s coming from inside your head? It’s difficult to describe. I was also horribly fatigued, but both of those things have left after ibuprofen and a lot of sleep + rest. I wore earplugs almost constantly up until yesterday. (Which made it a little easier to listen to music, actually… Yes, with the earplugs still in.) I’m not sure if my extreme sensitivity to light and sound was due to the M.E. or other infections; an overactive nervous system was one of the things that became more frequent before I started treatment.

On December 23rd I was a little Lyme-y, my upper spine was hurting and my arms would randomly go numb and weak… Mild fever… Also VERY thirsty… But that was basically it! Later that night we actually took a short car ride out to see the Christmas lights!

Christmas night I started having arrhythmia and accompanying dizzy spells… Which was startling because, it was the same type of dizzy spell that has been happening off and on the past few weeks. Now I’m wondering if this “dizzy feeling inside my head” could actually be coming from my heart? I have no idea, but whatever the cause, palpitations + dizzy spells last night basically meant, I’d had too much exertion, and needed to stop what I was doing, and rest. Immediately. So, I did.

It should go without saying that now, after the (albeit mild) Christmas activity, I’m having increased muscule fatigability and weakness due to the crash. My legs are not wanting to work with me, my arms give out very rapidly, and.. today I had the first non-bath since before I initiatially starting taking antibiotics, when I was too ill to properly bathe and had to rely on.. I guess you call them sponge baths? When I was in the ER they sent us home with some microwavable bath cloths, so it wasn’t entirely unpleasant, actually! The shock factor has worn off, since it’s not the first time that “it’s come to this.” I can sit up, so my mother washed my hair in the kitchen sink, with the faucet sprayer! Our inside dogs looked onward, very concerned as to why their owner was suddenly taking over their bathtub.

But yes, I can be upright, so I’m happy to say at least my POTS-related symptoms are improved. I’m just waiting on my muscles to recover, and be able to tolerate more sensory input. Tomorrow we are planning an outing, and given the state of my crash I’m not entirely convinced it’s a smart idea, but we’ll see how I feel tomorrow. I may not be able to use my arms for much, and my legs are not happy, but I can be upright, and I can wear earplugs as I always do when I’m “out.” I think I could do it… Oh, and since being back on my herbs, the dystonia symptoms are returning in the evenings. I didn’t expect it to happen so soon!

And finally, all of the tests I had run from my endocrinologist, were normal. All.. what, eleven of them?.. including the ACTH stimulation test, so I do not have adrenal insufficiency. I’m.. glad, in a way, because like I said, had I that disorder I would not have been able to treat it without risking an imminent decline. But I’m also not glad, because it just means that, yet again, there’s nothing else was wrong, and nothing else was contributing to my body’s dysfunction except what I already have… Which is scary. The doctor has mailed me copies of all the results and I’m waiting for them.

a rainbow at night

I’m still alive… No, really. (A Run-In with Probiotic-Induced Sepsis?)

So a rainbow at night has officially ended up in the Emergency Room three times within the past 12 months. Almost five if you count last month being an extremely close call, and the fact that I very nearly had to go back after this third time.

Let me just say, this is not at all what I invisioned for myself a year ago… Then again, sometimes I don’t think I realize just how bad off (physically) I really am, and how that sets me up for these things.

I have no idea how I could have contracted the stomach bug that’s torn through my family members one by one. We are so, so careful to avoid getting me sick because of what happens. My family knows that the moment I catch anything, it’s straight to the hospital. I’m also unsure if the horrendous headache I got the night before “it” happened, was a sign, or just one of my usual anamolies. All I know is, I woke up on Saturday feeling as if were going to pass out, but since I do that sometimes regardless, I didn’t think anything of it. While you sleep, your bowels are at rest, and when you wake up, they begin to move again: Your digestive tract requires a lot of blood to function and digest, so me feeling lightheaded due to the redirected bloodflow to my colon wasn’t too unusual. But in addition to feeling lightheaded, I was also extremely dizzy.

Immediately after rising, I started making repeated trips to the restroom. At first I thought it was just because of the brown rice I ate the day before, because, well, whole grains do tend to get your digestive tract moving, you know. But after the sixth trip, I sensed things were taking a very bad turn. The dizziness got worse, the nausea started, and nothing was working to ease either ailment. My fever went from 98.6°F to 100.6°F within the span of an hour, and I found myself writing down my medical history on a piece of paper while I still had the ability to either write or be coherent: The inevitable was about to occur. Literally within a span of two hours, I had massively dehydrated, developed a fever of 102°F, a heart rate of 160+, vomited up absolutely everything in my stomach, went to the restroom eight times, become mildly delirious, and my family was calling the ambulance.

This was without a doubt the most severe emergency I’ve had to date. First off, my fever hasn’t gone above 100.5°F in over eight years, no matter what the circumstance or infection; I think it topped off at 102.1°F, which is unbelievable and the equivalent of 103-104°F for someone else. But perhaps the most shocking part was that they had to give me three bags of saline for the dehydration, I only had to urinate once, and it was barely enough to use for their required urine sample. To clarify for anyone not familiar with saline drips/IV fluids: Usually you’ll get one, maybe two bags, and then have to pee every 10 minutes. I was given three liters of fluid and only expelled about an ounce of it. Needless to say the ER staff was beyond baffled. My heart rate topped at 180 bpm lying down, and over 200 when trying to sit up. I was given a constant 2L supply of oxygen, because for some “strange” reason it helped my dizziness, even though my O2 levels were supposedly adequate; not sure what to say about that one…

The other major unnerving thing was my blood pressure actually dropped after the IV infusions, which is.. the complete opposite of what’s supposed to happen. My normal blood pressure is 120/70. However, after six hours of infusing liquids and other drugs into me to stop the fluid loss, my blood pressure dropped to a record 79/45. Their rationale for letting me leave was literally that I was still conscious. Need I repeat that your blood pressure is NOT supposed to do that after three liters of fluid?!

They offered to keep me, but I just wanted to get out of there. By midnight I was finally back home, and having ceased vomiting and everything else, I thought I was safe… We’ll get to the horror that was my bloodwork later.

After much sleep, and.. ugh, an absolutely terrible night of convulsing for hours on end, Sunday brought with it a partial recovery, and my fever finally broke that afternoon. Until that night, when I had a “relapse” of whatever had happened the first time. Once again I was making repeated trips to the bathroom, spiking a fever, and vomiting, until by 7am Monday morning I was overcome by a familiar feeling of dread. My insurance wouldn’t pay for the medicine I needed to stop the vomitting and diarrhea and keep me from dehydrating, until they had an authorization form which could only be obtained Monday thru Friday, and only from my primary doctor. After all the back-and-forth calls and realizing we had no other option, we called the pharmacist with the ER doctor’s prescription to just ask for the pills and pay out-of-pocket: Either I had them, or I was certainly going back to the hospital for dehydration. Soon I had a couple of pills to tithe me over and stop me from losing more fluids, but it wasn’t until much later I’d realize that whole fiasco of trying to obtain the medication was stalling me, with life-saving results. 

By the end of Monday night I was finally on my way to a real recovery, and I even got a Migraine late that night and felt almost normal because of it: To think, after all of that, a Migraine! Something so commonplace…

Today has been.. difficult. I’ve been on oxygen all day, and am just very.. uncomfortable, and very dizzy. But no where near as uncomfortable as this weekend, of course! Four days since, and I think being on oxygen all day is actually the best case scenario.

One year ago this week, my immune system crumbled and I developed a very “determined” candida overgrowth. I’ve been fighting it ever since. Well, after eight months on various antifungals, a month on Sporanox, and those couple of weeks on Vitamin C, followed by practically everything in my colon being evicted… My tongue has never been more healthy and pink. I honestly think the candidiasis may be completely gone. But as for my bloodwork…

Every time I’ve been hospitalized (or near-hospitalized) during this long fight, it’s been during my Lyme-flare week. So it would make sense that my neutrophils were high (fighting bacterial infections) and my lymphocytes dropped (making room for more neutrophils to fight the bacteria). Yes, every time, has been during a bartonella flare concurrent with my Lyme flare week plus some other unidentified combination of pathogens roaming around giving me random symptoms. That’d be enough to send anyone to the emergency room! Well, every time except this time.

Because everyone is different, I might should mention that my usual lymphocyte count is around 2 k/cmm. Anything from 1.2 – 3.4 is considered normal, but during this hospital visit, my lymphocyte count was 0.3 k/cmm. And my neutrophils, which again fight bacteria, were double what they should have been, higher even than when I’m Lyme-ing.

I’ve never had anything like this happen before. Something that startled me to realize was that I took a probiotic capsule on Sunday night when I was in recovery (out of habit because I’ve been doing so for the past eight months, until about two weeks ago)…and then two hours later is when all my symptoms began to return, albeit at a less-advanced rate. And what did I do on Friday night before I went to bed? Take those probiotics…

Complications from taking probiotics are very rare, and only happen to the immunocompromised and/or severely ill. But I got to thinking, that was really exceptional timing for me to begin feeling ill all over again, just two hours after taking another probiotic capsule. And I really did do everything right to avoid getting that stomach bug that was going around…

SO WHAT IF…

What if it WASN’T a stomach bug that caused my sickness? What if, because my candidiasis has improved so much after taking the Vitamin C, that taking my normal highdose probiotics–that up until now I’ve needed–actually overpopulated my normalizing colon, and invoked an immune response to the probiotics? It was actually just a few weeks ago someone posted on LymeNet about the potential danger of probiotics…that danger being, the very rare but real complication of lactobacillus septicaemia: Probiotic-induced sepsis.

And now in my head I have floating around all these facts that are just too coincidental. My bloodwork clearly shows bacteria being the initiator of my problem; my symptoms weren’t like the rest of my family; I took probiotics the night before this happened the first time; I took them again the night before it happened the second time; my candidiasis was almost cured therefore not requiring the same dosage of probiotics I used to take; I have primary immunodeficiency disease and am a prime candidate for something like this to happen…

To stop and think about this is just.. beyond me. This was one of those experiences where the medical professionals speak in hushed tones outside your door instead of in your room, and this may have been why: I had every single symptom of Systemic Inflammatory Response Syndrome (SIRS), a condition related to sepsis that has nearly all the same symptoms. However, unlike true sepsis, the symptoms of SIRS are related to the body’s immune response to the assumed intruder, rather than the result of the bacterial infection in the blood (sepsis) itself. I don’t have the medical degree to know whether I had this or true sepsis, and unfortunately it’s too late to obtain a proper diagnosis by giving the ER doctors this major piece of the puzzle. I’d bargain for SIRS due to the fact that eliminating the cause–the probiotics–calmed down my symptoms, but who knows. They’re very similar and either condition can lead to shock. Specifically, in combination with my elevated neutrophils, the hypotension + retaining urine after three liters of fluid is a sign of approaching septic shock. And that’s.. really.. I.. I don’t even know. I don’t even know how to process that in my brain, yet. These things lead to organ failure, and septic shock in particular has only a 50% survival rate…

Criteria for SIRS were established in 1992 as part of the American College of Chest Physicians/Society of Critical Care Medicine Consensus Conference. The conference concluded that the manifestations of SIRS include, but are not limited to:

  • Body temperature less than 36°C or greater than 38°C
  • Heart rate greater than 90 beats per minute
  • Tachypnea (high respiratory rate), with greater than 24 breaths per minute; or, an arterial partial pressure of carbon dioxide less than 4.3 kPa (32 mmHg)
  • White blood cell count less than 4000 cells/mm³ (4 x 109 cells/L) or greater than 12,000 cells/mm³ (12 x 109 cells/L); or the presence of greater than 10% immature neutrophils (band forms)

SIRS can be diagnosed when two or more of these criteria are present.

Fever and leukocytosis are features of the acute-phase reaction, while tachycardia is often the initial sign of hemodynamic compromise. Tachypnea may be related to the increased metabolic stress due to infection and inflammation, but may also be an ominous sign of inadequate perfusion resulting in the onset of anaerobic cellular metabolism.

The moment I woke up on Saturday and my bowels began to move, my body immediately began its attempt to rid itself of the probiotics from the night before. And it kept going until it couldn’t anymore. It mostly succeeded before I got to the hospital. And once I took the second probiotic pill the following night, it began again. I didn’t realize it at the time, but it was because I had no medicine at first–no authorization to get the medicine because it was a weekend–that was, in a manner of speaking, saving me. The symptoms I was so desperate to stop with medication were the same symptoms getting rid of the offending cause of the SIRS (?), and if I’d actually had the medicine to stop my body from doing that… I… I don’t know what would have happened. My body would basically have been stuck with a bomb inside of it, and no way to get it out.

And it’s for situations such as these that I believe, even if things don’t go the way you want them to–like me not understanding why I wasn’t immediately getting that medicine to relieve the terrible suffering I was feeling–it’s always for your own benefit; even if you don’t see it at the time, you will. I did get my medicine, but only after enough of the lactobacillus bacteria in my colon had been eliminated.

I doubt I’ll even be able to wrap my head around this until tomorrow, or later. Just, how things played out, with the information I knew beforehand, the timing of the events, and thus being able to figure this out before I took another probiotic capsule and God only knows what would have happened… I don’t know. What this means for the future, will I ever be able to take probiotics again, I have no idea. What I do know, is that I am one blessed soul, who’s obviously still meant to be here. And it seems my nine month battle with candidiasis is finally over. That’s enough for right now.

a rainbow at night

Second Internist vist: Dehydration caused by infections

I’m in that awkward stage between activity and crash, where your brain just keeps running… So throughout the night I’ve typed THIS.

“Today’s” second appointment with my Internist/Infectious Disease doctor was very productive. First off, my syphilis and HIV tests came back negative! Haha, so nothing cross reacted and gave him a false positive. :)

Second I need to mention, he’s under the impression I had “meningoencephalomyelitis” in 2002, instead of having Myalgic Encephalomyelitis, now. One is a symptom that goes away, the other is a disease that doesn’t. But I didn’t know he thought that until I got a copy of his notes on the way out the door. Now I wonder what on earth he thought when I kept referring to when I said “ME.” That, and, since he misheard me (I wasn’t able to fill out my own forms that first visit, so I didn’t get to write down my medical history), he wasn’t able to ask the crucial question of, “What is that?” and is probably under the assumption that there is no diagnosis for any of my symptoms, or *he* might think *I* think Lyme disease is causing all my problems… BLAH.

Regardless. All the tests came back negative for the things they routinely test me for, but I did find out one crucial piece of information from my bloodwork: My near-hospitalization was indeed caused by a more-severe flare of infections, and thus my rapid dehydration was definitely not caused by caffeine in any way. My hypothesis about dehydrating due to one’s immune cells needing extra potassium and calcium to fight infection, appears to have more evidence behind it.

My results showed elevated neutrophils and decreased lymphocytes, two typical findings when your body is fighting an acute bacterial infection (or in my case, right during an infection flare). These are also the same things that happened with my other two hospitalizations. My eosinophils have remained elevated, but dropped since September, though I am unsure if that’s just what they were doing anyway, or if they were low because my body was focusing on creating more neutrophils; an increase in one type of white blood cell will usually cause decreases in the others, such as the 40% drop in my lymphocytes, and.. also the 50% drop in eosinophils? Who knows. So, I’m not just imagining things. This stuff really is happening. Perhaps it even solidified what I was telling him, because I mentioned how I was having an infection flare on the day of the blood draw (I explained to him that I almost ended up in the ER after our first visit), before he showed me the results.

He asserted that Lyme disease DOES exist in the state I live, that he’s had patients who’ve suffered acute infection, and one patient who had it for nine months, but they both tested positive by PCR, so he was confused that my PCR was negative while my Western blot (IGeneX) showed positive bands. I explained to him that band 39 cannot cross-react with anything, so I’ve definitely had exposure to the bacteria, and also how chronic Lyme is a clinical diagnosis that you confirm with blood tests if you’re really lucky. In the end, he said I should restart the Doxycycline, but only once the candidiasis is no longer a problem.

He thinks I really need to go to a medical center, which is a place where I can have a bunch of doctors from various specialties look at me while in the same room together, so no jumping around from doctor to doctor every few weeks: They’ll all be in the same place, trying to figure me out. This is the FOURTH time I’ve been told this. The first was by my neurologist who was convinced I had some rare neurological disease (was he ever right…), and that a medical center might benefit me. The second was.. well, I’ve forgotten who, but I remember it being said.  The third was after/during my last ER visit in July, where [insert clinic name here] was ready to admit me and “figure out what’s wrong”; for the sake of managing my M.E. after all I’d been through, I declined. And now, this guy.

So I finally accepted the offer.

He even offered to personally condense my medical history for this medical center (I’ll have to explain to him about having M.E.! I’ll send him Dr. Hyde’s definition from his book if I have to!) after we told him my PCP’s office is notoriously.. well, incompetent, and can’t be expected to do it correctly. The man genuinely cares. In fact my only complaint is concerning his–yes, I’m afraid it does exist–all or nothing approach to how most infections work. Either I’m going to be completely incapacitated with tons of measureable signs, or completely fine, so the concept of chronic infection without the usual tests to confirm, doesn’t sit well with him. However, if he knew about my pre-existing condition and all that it implies, he might see that differently. Again, he thinks I just had “meningoencephalomyelitis” back in the day!

Last time he said he couldn’t think of any viruses to test me for, so I asked him to specifically test me for the ones I read about the most: HHV-6, EBV, and CMV. Tests using IgG/IgM would be useless, so he wanted to do the tests via PCR, which (theoretically, and in acute cases) would show current infection… Unfortunately these have a poor chance of turning up positive for chronic activation, even if I do have something stirring. He told the story of an unusual patient who was positive by PCR, yet negative by culture? That truly is strange. How can one test show current infection with an organism, that the second test says cannot be isolated? Shows how well they work, really. But hey, I’ll take it. Maybe I can beg the medical center to test me differently…

But that, I’m really not sure how I feel about, in general. It might just be plain useless. What can they really do for me? How will they know what to look for, when they don’t believe in or understand these two rare conditions I have, conditions about which most people have very inaccurate understandings, at best? I feel like going there and having them run more tests and not finding anything–because I doubt they will–would make my case worse, because then everyone else will think, “Well if they couldn’t find anything, surely it’s not there…” They can’t give me any reason for the things I have going on, yet they dismiss my explanations. (DO THEY NOT SEE MY BLOODWORK?! I CAN’T MAKE THAT HAPPEN BY WILLPOWER, YOU KNOW.) I loathe being forced to fit into their box. I do not fit into their box! But I also refuse to be one of those patients at whom they go, “Oh, look at that, she has bartonella infection in her heart and Lyme bacteria in her brain!” when I’m on the autopsy table. Not if I can help it. :\

He again seemed really baffled about the tachycardia and blood pressure problems. I showed where my cardiologist wrote “possible hyperbeta adrenergic-type syndrome” and claimed that I didn’t have dysautonomia, followed by the paper listing the actual tilt table test readings. The first thing he noticed was that I started out with a heart rate of 115, which is not normal. The first thing I noticed was that, adrenergic-POTS is made worse by caffeine, so I can’t have that type.  Telling him about how caffeine helps me seemed to spark this train of thought (which he spoke aloud) that ended in, my brain is not sending the right signals to my blood vessels about how to constrict and maintain my blood pressure, so my heart is having to compensate by increasing (becoming tachycardic), and in the long run that is not good at all. Eventually my heart cannot keep up. (I’m thinking that + the mitochondrial dysfunction might be why one of the three leading causes of death in M.E. is heart failure.)

Well, I think I covered everything. I won’t have to go back and see him unless I need to, like if the tests come back positive for any of the viruses and I have to ask about treatment. But that probably won’t happen. Now, onwards to tomorrow, where they once again extract an obscene amount of blood from me…but this time, with a twist! :D

a rainbow at night

FINALLY! American Red Cross bans CFS patients from blood donation indefinitely

It’s about time!

“The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease.

The virus is known as xenotropic murine leukemia virus-related virus or XMRV. Some studies have found that people with chronic fatigue syndrome are more likely to carry the virus. But it remains far from clear whether the virus causes the disease.

Nevertheless, the Red Cross decided to bar people with the syndrome from donating “in the interest of patient and donor safety,” according to an announcement from the organization.”

Source: Red Cross bars chronic fatigue patients from donating blood

See also: American Red Cross Statement on XMRV and Chronic Fatigue Syndrome


Completely unrelated, but: Today I got an “official” diagnosis of ocular migraines. Thanks for that, Lyme disease. On the plus side, no consistent vasculitis in my eyes, and my vision is the same level of impaired that it’s been since I was.. wow, twelve! This is ironic, because in the waiting room I had trouble reading the paperwork, a recent development; how transient these symptoms can be!

a rainbow at night