No more minocycline and guilt over happiness.

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

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

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

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

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

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

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

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

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

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

a rainbow at night

Article: Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi (Lyme disease)

Source.

Background: Lyme disease is a tick-borne illness caused by the spirochete Borrelia burgdorferi. Although antibiotic therapy is usually effective early in the disease, relapse may occur when administration of antibiotics is discontinued. Studies have suggested that resistance and recurrence of Lyme disease might be due to formation of different morphological forms of B. burgdorferi, namely round bodies (cysts) and biofilm-like colonies. Better understanding of the effect of antibiotics on all morphological forms of B. burgdorferi is therefore crucial to provide effective therapy for Lyme disease.

Methods:
Three morphological forms of B. burgdorferi (spirochetes, round bodies, and biofilm-like colonies) were generated using novel culture methods. Minimum inhibitory concentration and minimum bactericidal concentration of five antimicrobial agents (doxycycline, amoxicillin, tigecycline, metronidazole, and tinidazole) against spirochetal forms of B. burgdorferi were evaluated using the standard published microdilution technique. The susceptibility of spirochetal and round body forms to the antibiotics was then tested using fluorescent microscopy (BacLight™ viability staining) and dark field microscopy (direct cell counting), and these results were compared with the microdilution technique. Qualitative and quantitative effects of the antibiotics against biofilm-like colonies were assessed using fluorescent microscopy and dark field microscopy, respectively.

Results:
Doxycycline reduced spirochetal structures ~90% but increased the number of round body forms about twofold. Amoxicillin reduced spirochetal forms by ~85%–90% and round body forms by ~68%, while treatment with metronidazole led to reduction of spirochetal structures by ~90% and round body forms by ~80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ~80%–90%. When quantitative effects on biofilm-like colonies were evaluated, the five antibiotics reduced formation of these colonies by only 30%–55%. In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%. Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonies.

Conclusion: Antibiotics have varying effects on the different morphological forms of B. burgdorferi.

Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.

Read as (what all of us “Lymies” have already known for years): The bacteria change forms to evade the different classes of antibiotics. And none of the antibiotics they researched had any greater than a 55% success rate at eradicating the biofilm form of Lyme. Rifampin supposedly treats the cyst form, I wonder why they didn’t test that? (Granted, all of this was done in-vitro, and sometimes things react differently when in the human body.)

First off, I have to say this makes me feel very good about my LLMD suggesting that I go on Tindamax after the Rifampin! If the Rifampin is killing the round/cyst form right now, and this study shows that Tindamax (tinidazole) eliminated up to 90% of both forms of the Lyme bacteria… Goodness, I could be cured at that rate! (Well, unless they’re making biofilms… The jury is still out on how to completely get rid of those.) I’m also impressed that tinidazole kills even more than its close-cousin Flagyl/metronidazole (because we all know how well Flagyl works for neuroborreliosis), and (from what I’ve looked at) has less side effects…!

At first I was shocked about what was mentioned of Doxycycline actually increasing the round/cyst form of the Lyme bacteria, but when I remember that Doxycycline does not kill, it only stops the replication process, then it makes sense: If the bacteria cannot reproduce one way, they will just morph and produce in whatever way enables them to survive. This study actually……well, it actually proves that, doesn’t it? Yes.

I think this study was much-needed, and even a bit groundbreaking, if you ask me. But shhhh, “chronic Lyme doesn’t exist,” you know… Hahahaha!

a rainbow at night

[Edit: This makes more sense today, so I had to edit a few things. I got confused into thinking that the biofilm and cyst form were the same thing, but now I remember from the Under Our Skin documentary that the biofilms are those little clusters of spirochetes stuck together in that gel-like substance. You can go here to read further explanation.]

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 having to run for safety has sent my body reeling. I definitely 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, even, 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.

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 the M.E. and the Lyme disease.
  • He was actually HELPFUL and offered me HELPFUL tests and rehabilitation.

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 steroids. Hmmm…!

As far as 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.

Ah, and I didn’t prompt him at all, I swear, but I ultimatey 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 dysautonomia. (I’m just neuropathic all over the place right now; he likened my nervous system to that of an infant’s, learning to grow and wire itself in the appropriate ways… I just hope it doesn’t MISwire.) 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 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–! 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, and he’s giving me a referral for neuropscyhiatic testing to better understnd 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 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, 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 cogniton will improve anyway? Ha.)

Tomorrow I see my cardiologist again, probably 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

Lower Rifampin dose, Migraine, still no caffeine

Sunday night I realized I couldn’t go through with the 600mg Rifampin. As I mentioned in my last entry, that day was very rough, and after my night dose, things only got worse. The herx reactions I was getting were severe, mentally and physically, and I felt I might take a bad turn, if it was that early in treatment and I was already feeling that horrible.

Monday I called my LLMD and he has now put me on 300mg, instead. Which I was taking the first week and handling all right… But I started getting that severely weak feeling again, like something was just wrong. So for now, 150mg twice a day, and hopefully in another month or two I’ll go back up to 600mg. It would be terrible if we tried to do too much too fast and ended me in the hospital yet again. My body can only take so much! I have the feeling being on Azithromycin along with the Rifampin is what made it unbearable, since it was adding Doxy to my Rifampin 600 dose that sent me over the edge last time. And Zithro works like Doxy does–prevents the bugs from replicating, including bartonella. More dying bugs, bigger herx, more strain on my system to keep up, more risk of hospitalization. If we can avoid that, we must.

Last night, right before bed, I introduced Splenda/sucralose in the form of three sugarfree cookies. That was a bad idea.

I awoke at 7am with a Migraine. I’m really against Treximet unless it’s serious (such as maybe another ocular migraine, or stroke-like symptoms) so I figured, why not see if my body is still reacting to caffeine in an abnormal way? I’ll have a cup of coffee like I used to when I got rid of Migraines. Another bad idea.

Let’s just say I’ve spent the majority of today in a feverish, tremoring, nauseated, irritable bowel-ridden fit of dysautonomia. And I haven’t even gotten to take my antibiotics yet! The caffeine woke up my digestive system far, far too much. And you know what that means: Let the nervous system dysfunction begin. I was going back and forth to the restroom (quite a perilous journey for someone with tachycardia) for frequent urination and “other” things, all the while experiencing the terrible symptoms I described last time this happened. I was scared I was going to dehydrate at the rate I was going, but I was able to get down a bottle of water (gradually) and a cup of hot soup once my bowels calmed themselves. I could have saved a lot of hassle by being able to take Zofran (ondansetron) but after getting a friend to check the interactions for me, he said that it interacted with my Zithro in that it could cause an inceased risk of arrhythmia by means of QT interval…the same mechanism that disallows me to take Diflucan. (I mean, sure, that would have been fairly decent “proof” while I’m wearing this holter moniter, but not at the risk of going into cardiac arrest!)

It’s safe to say caffeine is still on the “no” list, as is anything with sucralose in it. Lesson learned. I can only handle the meager amount of caffeine in my Fioricet tablets (which at the dose I take, is only about 10-20 mg).

a rainbow at night

I think this is confirmation.

All right! So we have the mystery of random limb numbness/limbs falling asleep most likely solved, and the mystery of the “episodes” just about solved… And this morning it happened again! So if that doesn’t confirm it, I don’ t know what does!

Took Rifampin. First my tongue began feeling strange (never any swelling), then the top of my right arm began going numb, then my hands and feet went cold and mildly numb, and the right side of my face was only half-responsive. As in, if I smiled and only exposed the right side of my face, you would only barely be able to tell. Went to the restroom… And everything died down. I find this absolutely remarkable! I suppose as long as I’m not on Doxy or having extreme herxes like I was this time last month, I can probably avoid the emergency room, since the “episodes” haven’t been that severe.

My Migraine numbers are down. I haven’t had a full blown one in.. huh, it might be a week, now. No more reactions to temperature/foods since being off the Doxycycline. I don’t think there is anything left that’s without some sort of explanation… I figured it would piece together eventually if I just rambled enough! Haha. Things are a little more comforting, because now that I have an idea about what’s causing things, I know what to do in order to avoid them, or at least, not make them worse.

Last night I had Truvia with strawberries…and did experience a lot more limb numbness, however, yesterday I also started the Rifampin twice a day, for the full 600mg, which also causes the numbness, so! The jury is still out on how much it affects me. I’ll figure it out eventually. Even after the first additional dose, I needed Lortab for the horrible headaches, so I’m glad we started slowly this time. Then after last night’s dose I had small surges of sudden anxiety and really terrible thoughts, but I was able to talk to friends until they passed. Yesterday may or may not have been a bartonella flare, anyway, so I guess it’s good timing that I was to up the dose then. My thoughts are still a little sporadic today. The dystonia is back.

Right now I’m struggling with the idea of going to three more doctors in the next two weeks. Infectious disease specialist –> Neurologist –> Primary physician –> Cardiologist –> Neurologist –> Immunologist –> Cardiologist –> Another neurologist

I am burnt out, and sick of wasting all of my energy and my insurance’s money on these people who do not help me. It’s taking all I have not to just cancel everything. I especially do not want to see this additonal neurologist but three people have referred me to him… I can’t figure out whether to check the “Chronic Fatigue Syndrome” and “Fibromyalgia” boxes on the applications they sent me to fill out for his visit. I had FM but do not have it now, and I never had “CFS” but yet was misdiagnosed with it and it’s on a lot of my old papers… The only conclusion I can come up with is to write down “was misdiagnosed with” and bring Dr. Byron Hyde’s book on M.E. and CFS in case he wants more explanations.

Blah.

a rainbow at night