Long overdue update, oops!

I want to say to my future self, when I look back at my health blog and notice this huge gap of no symptom charting: I AM SO SORRY. But I will do my best to recap the most important parts!

The last real post I made was of my new accomplishment of cooking myself breakfast, and taking a bath in the middle of the day. While I haven’t been cooking completely on my own, I have been helping with all my meal preparations. I have also taken a few half-baths during the day (and by that I mean, I often split it up into parts, since a full bath is too much expensure at once).

When I made that post, I made note to mention my improvement was mostly medication-induced, as I was nursing a headache… Little did I know I was in the beginnings of another one of those “two weeks of headaches” spells. It was exhausting having to be so medicated just to be able to tolerate the pain, but I had my last one a week ago, and haven’t had one since. There were all sorts of them! Some felt like slight migraines but they weren’t, it was just.. nerve irritation, much like what was happening to me before I ended up in the hospital in February, with all sorts of cranial nerve involvement.

On July 2nd (Saturday), I made a very brief private entry describring having a bad day:

Today has been a bad day. i’ve had momens where I thought I might just pass out while laying down. It started yesterday I guess, when I had one of those “episodes” …

During the two-week-headache-spell I had a lot of nerve inflammation. All neuropathies were flaring terribly, and I even had one “episode” so bad that I once again started shaking, which also hadn’t happened since back in February. I lived off of ibuprofen. It was a truly rough two weeks, which should explain my lack of updates! Simultaneously (and perhaps the cause), my so-called “vanishing” Lyme flare decided to show up for a rude visit (I jokingly say it was making up for June’s middle-of-the-month flare being so mild). The headache was included, yes, but with it I also had worse dystonia, nerve pain that (as I think I’ve been mentioning for several flares now) affected mostly my arms, more numbness in my face and on top of my head, and very much increased weakness. Of particular note is that the numbness that’s been happening with them feels more like a pinched nerve, but doesn’t actually appear to be one. Late night on June 29th, I privately wrote, “Nothing too significant to report, but for the past hour or so I’ve had increasing numbness in my left arm.” And then it began…

Well my Lyme flare seems to have started again, similarly, with more feelings of a pinched nerve in my arms. I am also experiencing leg weakness, facial grimacing, and dystonia. I haven’t walked for two days due to some combination of muscle pain and shin pain, in combination with the weakness. I’m continuously told the shin pain is bartonella, but is it?

Back in the same note I wrote on the 2nd (Saturday), I also mentioned that the muscles in my right leg were hurting… And I can’t help but realize that the same thing has been happening to me, again, for the past two days. I’ve noticed a strange pattern where every Friday and Saturday are bad days for me, for probably the past five weeks. This weekend wasn’t any exception…except for that I precipitated it and therefore took to rest, which definitely helped me get through it easier, lest I wouldn’t be typing right now! I’m not positive, but I think this weekly pattern might be bartonella related… I recently found out I most likely have two strains of bartonella, and possible erlichliosis or rickettsia, but more on that later.

On the 14th, I wrote of having a very unstable gait (the last day I walked, as of right now) and coughing, with several moments of spontaneous exhaustion. I also mentioned my arms getting weaker (a lot in part with me overdoing it on Wednesday, though), and that’s when the pinched nerve feeling began. I’ve also been very thirsty again, something akin to what happened to me back here; I also had the leg pain with that Lyme flare, so maybe it’s just a strange new Lyme symptom?

Soon, I’d like to make a post–perhaps a sticky post to tag to the top of my blog–as a reference for all information related to human bartonellosis. I think 75% of my search referrals are from people searching for information about this infection and its chronic symptoms. And having personal experience with it, I may as well compile what I know about it, for those who need it.

Next I shall write about the exciting results I got from my IGeneX testing!
a rainbow at night

4 thoughts on “Long overdue update, oops!

  1. I can’t wait to see what your test results come back saying. There’s just nothing like getting results that give you definitive information. So you can pretty much know what you are working with and where to go from here. YAY!

    I hope that this week is a good one for you! Blessings!! <3

    Also, good job on documenting your symptoms. Wow. I finally stopped. When I started seeing a Dr. who would just look at me blankly and say, "Well, thats just Lyme" whenever I just mentioned the symptoms, I gave up. (I thought they wanted to know what is going on?!?) I try not to pay too much attention to them anyway.

    • Yes, I’m excited to post them! Up until now we’ve been treating knowing that it’s there, but still unable to catch it with tests, for the most part… Not exactly the case anymore!

      Aww, thank you. :) I hope your week is as best as possible, too!

      And to be frankly honest, I think it’s pretty dumb of that doctor to blame everything on Lyme. Borrelia burgdorferi is a beast, but the coinfections are not only more dangerous, but will do the damage (read as: kill you) must faster than Lyme will. Lyme replicates every 2-4 WEEKS; most coinfections replicate every 4-7 DAYS. That’s a lot of bugs reproducing.

      If not for my symptom charting we would not even know I had the bartonella, and I.. would probably be inadvertantly breeding some super-bart-bug from not being on the appropriate antibiotics. :\ I think it’s only safe to not keep track of symptoms if you’re on treatment for everything. For example, for the most part I don’t have to worry about what is Lyme, or what is bart, or mycoplasma, because I’m treating all of them with Rifampin and Azithromycin anyway. I still keep track in the event that I’ll need the information later (which has been the case many a time), but it’s not something I need to know.

      And for people with 5 or 6 bugs it’s near impossible to figure out what’s causing what… But it’s definitely important to jot down when new symptoms start, or when they go away, or if a certain symptom reappears at certain intervals, because that can help identify which coinfections are present. And one cannot get rid of Lyme disease until they treat the coinfections. Your immune system prioritizes, and it can’t focus on irradicating what’s left of the Lyme bugs, if it has babesia, bartonella, and erlichliosis trying to kill you twice as quickly.

      I hope you are treating the coinfections! They are much more viscious than even Lyme disease. If you’re not, you may want to investigate a different opinion/LLMD.

  2. I hope that all those horrible symptoms stay away for awhile O_O It can be quite discouraging to have good times for awhile and then suddenly be stricken with symptoms you thought were gone. I was worried about you, and so glad you are updating again! Here’s to hoping Lyme stays down! *pumps fist*

    Your IgeneX results ARE exciting *___* I want to read what you have to say about them! :o Did you know that I never got more than two ** things on mine? So impressive with the 3! Haha, it’s so weird, I think it’s hard for other people to understand how exciting it can be as a Lymie to get confirmative tests. People are so surprised because normally it’s bad lulz

    My right boob is hurting. I don’t know why you had to know that….but…..lol…it is! Extremely! What.

    I think having an additional co-infection and two bart strains would make a whole lot of sense with everything going on. *hugs you tight*

    • Well, after going through this for months I’ve accepted that none of these symptoms are gone…yet. They continue to cycle in and out, doing that two-week interval thing, so when they finally stop cycling, I’ll be elated, but I’ve realized that anything that leaves me probably isn’t gone for good just yet. Like the cardiac symptoms, and most all of the POTS symptoms (with the exception of bad days)–those are near completely gone and don’t resurface! :D Celebration time! But the fatigue and dizzness and seeing things and headaches, they just come and go. It’s all a process, and I really try not to get down about it. I am slowly improving, I can see that, and I just have to be patient with my body fighting for its life. I can never forget what a blessing it is to be able to undergo this treatment, even if it feels terrible sometimes!

      Ohoho! MY IMMUNE SYSTEM BEAT YOU IN SOMETHING, I WIN. *laughs* But seriously, that’s.. funny. And it was in IgG, too, something I don’t have a lot of~! Ha! :P

      Man, do you have that right. I think only two “normal” people knew how to react to me getting my results. Everyone else was just like, “Okay…” lol!

      MINE IS TOO. I’m getting ready to start the menses, and it does this every month. :\ But it’s funny how it’s just your right one, and it’s just my right one, too! Maybe we have Lyme-boobies! *laugh*

      Wouldn’t it? I’m not terribly concerned with the “other” one because my results would suggest it’s getting under control because the antibody levels are so low… Well. Either that, or because the bartonella is dominant, my immune system can’t be bothered with making additional antibodies for other things…oops! But who knows. I actually have this strange dotted rash on my left shin that’s been there for two weeks and it’s not razor burn because I haven’t shaved, haha! I wonder what it’s from… :O

      *hugs*

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