My blood pressure is normal right now, 3:28am Sun Feb 25 — BP: left arm 106/66 (78) right arm 108/64 (79)

This is the most normal my blood pressure has been in days, which is a good thing.

I’ve been having some strange spasms in my lower leg near the scab, but I’m hoping those are spasms maybe I’ve always had, but I’m just noticing them now.

We patients tend to do that — notice things we otherwise usually ignore when something shitty starts to happen.

I’m also dripping a liter of saline super slowly again, which could also be helping my blood pressure, but either way I’m glad it’s at normal right now.

I dosed myself up with Cipro an hour ago, and IV Meropenam 2 hours ago.

For the first time in 13 years of continually being sick to one degree or another,

I’m actually keep track of *every* single medication I’m taking and the *exact* time I’m putting it into my body. And keeping notes on my blood pressure too. Admittedly, part of the reason I’ve always been so resistant to writing down every single detail was because then I’d have the evidence of exactly how bad of a patient I really am…but alas, the urgency of the current situation has forced me to keep accurate records so I can figure out exactly what’s working and what’s not, or look for patterns over time —

At this point, I guessing it’s the scab on my leg that’s causing most of my current problems.

Everyone I’ve surveyed today, old nurses I’ve known, etc, all said it wasn’t normal to look like this after being cut out over a month ago.

I really might need some IV Vanco…mostly likely some kind of staph infection that got through because the scab created an entry point…

Hopefully my blood pressure will continue to be normal, then I won’t need to switch antibiotics. I’m only gonna switch if it’s ying-yanging too much….

(Meaning if it’s still super low in the morning, then the current treatment regiment isn’t stabilizing me enough, and if I don’t hit this very hard and fast, I’ll create an even bigger problem.

If I had gone to the ER like I should have a few days ago, real doctors probably would have connected my leg scab with my blood pressure problems, but I guess I’m just stubborn that way sometimes….I really hate going to the hospital, especially when I’m really sick.

Looking normal and healthy when you’re actually really sick is a curse I wouldn’t wish on my worst enemy…

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*Dramatic* Reduction In Yeast in my mouth. It’s definitely the Herbs.

I’m definitely a see-it-to-believe-it kind of gal when it comes to medicine,

and holy dang my tongue is almost completely clear of yeast only after two days of taking these herbs.

After the first day of all these antibiotics at once, the yeast was already much worse,

and now it’s almost gone.

Ive taken the herbs 4 times since I got the bottle yesterday, I most recently took 2 scoops at 7:45pm, fell asleep, then when I woke up a few minutes ago (it’s now midnight), I checked my mouth (as I often do many times a day), and I couldn’t believe it. The yeast was almost gone.

(And my blood pressure is completely normal right now too. Left arm: 108/75 (84). It doesn’t get any more smack down little diddily normal as that for me 😜👍. I think that’s more thanks to the antibiotics than the herbs, but it’s nice everything is getting better.)

Bad news, I’m a little constipated though…I told the energy doctor my bowels were getting a little loose from the antibiotics, now I’ve swung back too hard the other way lol. I don’t know if that’s the herbs or what, but I’m definitely gonna need some miralax soon 🤢.

I’m just happy my tongue looks so much better…And my blood pressure is normal. I told him that was my main concern — stopping the yeast so I didn’t have to take difflucan — as well as general kidney, liver support, etc, because I’m gonna need to take these antibiotics for a long time, so I want to help support my body better so I can make the long term journey…

So far so good, definitely 🙂

There is nothing else I’ve done that could account for the dramatic reduction in yeast.

(Now I definitely just need to check my blood work to make sure my system is okay, lol 🙂

I still don’t feel great, I know it’s gonna take a few weeks to feel more normal (normal for me that is),

but at least I don’t feel I need to be making my funeral arrangements right now…hopefully I’ve put that off for a little while too 🙂

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BP: 12:36pm left arm: 81/53(78) right arm: 102/72 (80)

Well, I guess the good news — my blood pressure isn’t getting any worse. The bad news — it doesn’t seem to be getting much better, at least in the mornings anyway.

Lately I’ve been taking my BP after a long period of sleep, which is usually different times of day, because my sleep schedule is erratic. Then I take it again throughout the day.

The good news yesterday, is that my blood pressure was completely normal around 7:30pm. Both arms were almost exactly the same too. That’s the first time it’s been completely normal in a few days, that’s definitely progress.

Now, it might be back to abnormal because I’ve missed a bunch of doses of my medications while I was sleeping…by 7:30pm last night, I had compliance for a number of hours, and I’d even taken some herbs. This morning when I woke up, it had been a long period of sleep…almost 13 hours — that’s a lot of doses to miss.

(Getting all of your medications on a regimented schedule is the main thing that’s good about being in the hospital when you’re really sick versus being at home. At home, it’s almost impossible to have true compliance, because when you’re really sick it’s hard to wake up when you’re super tired just to dose yourself up…especially if you’re like me, and have problems falling asleep and staying asleep in general when you’re really sick. Nobody wants to be disturbed, for anything.)

In theory, a few hours of missing doses shouldn’t be enough to effect blood pressure, but when I’m really sick I’ve noticed it can…

But the fact that my blood pressure is at least stable with the medication regime I’m on now—it’s not getting worse—that’s enough to convince me to stay in the path I’m on and see how this plays out over the next few days.

Since Actino is a slow growing bacteria, it just might take a week or two of dosing myself up before things go back to normal. I just have to be patient.

(Admittedly, patience is *not* one of my strong points…being deathly ill many times throughout my life tends to bread the opposite type of personality — the here and now, life it up today type of personality — because frankly we sick people know how fragile life is and that tomorrow is not guaranteed. This type of personality isn’t born out of selfishness, it’s born out of desperation. Maybe this time there really won’t be a tomorrow?

I just wish I felt better. I’m also very aware this blood pressure problem could be completely unrelated, or maybe fungal. I have so much yeast in various parts of my body I should be rising like dough. I’m hoping the herbs will get that under control because I don’t want to take difflucan. My liver is already stressed enough.

Herbs…yesterday I dragged myself to this Chinese ‘energy’ doctor I saw a long time ago, I figure it probably won’t hurt and maybe it could help. I’ve never really been a believer in such things, but when cod liver oil dropped my cholesterol 100 points it definitely made me consider anything is possible. It’s really hard for me to go anywhere right now — I pretty much spend my mornings feeling like I’m being sucked to the ground — but I had two vital stops yesterday, the dermatologist and this herb guy.

(I knew I couldn’t see either one of them if I went into the hospital, which was another reason to stay out.)

Dematologist: he definitely didn’t like my weird leg spot, and after feeling him out I’ve decided my recent feeling really sick and blood pressure problems might be more rooted from this scab on my leg than the Actino infection. I didn’t tell him I had an immune deficiency (sometimes it confuses doctors too much and they just shut down entirely because they’re afraid to say anything cuz they don’t understand it),

so what I’ve learned to do instead is translate what they’re saying to me, to fit within how my body functions.

For example, “when did you have this cut out of your leg? Over a month ago? It’s very red around the edges but the redness isn’t spreading too far from the center. If it was infected, I would expect more redness, pus and swelling.”

What I translate in my mind — since I don’t get redness or swelling or pus even when I do have an infection, so the fact there is redness at all is a cause for concern for me —

So I think to myself: ‘okay, it’s possible this is infected and that it could be causing the recent severity of symptoms’.

So what I ask:

“Doctor, *if* it was infected — and I understand you don’t feel this is — but if it was infected, what antibiotics would you recommend? IV Vanco?”

Hmph. He wasn’t sure what to make of this question, since he felt the problem wasn’t super serious, but he decided to play along. Plus I didn’t seem nervous or concerned or scared when I asked the question (which at this point I never am with a doctor — I’ve got way too many war wounds to be scared anymore.)

“Well — if it was infected — maybe IV Vanco if it was suspected staph, but most likely doxycycline.”

Bing. I already have doxycycline at home.

“What about Cipro? Would you recommend Cipro?” (I asked since I’m back on Cipro.)

Now the doctor is starting to feel a little weird playing this game with me, so he shakes his head and just blows off my Cipro question, saying again, “no, doxycycline. Definitely doxycycline.”

I could tell the doctor was now done playing this game with me. I could see all over his face I was starting to ask too many questions and he didn’t understand where the questions were coming from.

So I smiled brightly, looking so normal and healthy, “Well, thanks doctor!”

Now he was pleased that I seemed pleased. And the weird questions were officially over.

Back to business, “Just make sure to put xyz jelly over the scab (I can’t remember the name of it), it keeps bacteria out and helps with the healing process.”

“Would bactorban ointment work?”

He flashes me a look. Now I’m back to the weird questions.

Slowly, “Well…yes…bactorban ointment would work, but I don’t think you need it…”

Translated into my mind: get bactorban ointment asap. His impression that my leg wasn’t quite right, but he thought it wasn’t that bad either,

well I know why it wasn’t that bad either — my immune deficiency.

Since I’m on Meropenam, Flagyl and Cipro, I think that should cover whatever could be coming from my leg,

but if I’m not seeing significant improvements by Monday I’ll definitely call a doctor and get some IV vanco…I’ve done a lot of Vanco over the years, it hasn’t let me down yet.

And the herb guy? A bottle of mixed herbs and some hope and prayers. I guess that’s all you can expect, right? And my blood pressure was normal two hours after I took some yesterday. Maybe it will do some good…

(This was a painting on the wall of the dermatologist office. I thought it was kinda cool.)

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BP: 5:45am left arm 83/50 (75) right arm right arm 91/67 (79)

I actually feel a little bit better today even though my blood pressure really isn’t better.

(I like the jump in my pulse a little bit in between arms, I got nervous after I did the left arm and it showed when I took the right 🙂 )

I’ve been keeping track the last 24 hours of *every* single medication I take and the exact time I take it, which is a first for me…perhaps I should have been doing this for years, but now I really need that kind of information. The problem with the infection I have now (Actino), it’s hard to tell the difference from day to day, what’s working or what’s not working (maybe cuz it’s slow growing?). Normally in the past, I’ve always been able to tell, almost instantly, whether or not an antibiotic was at least helping, because it would take an edge off.

This is the first time it’s been really difficult for me to tell quickly whether or not an antibiotic is working, and now that I’m really sick, so I just need to keep track. Once I find a combination that does work, I’m going to have to stick with it…for a long time.

So the combo I’m doing right now:

IV Meropenam
Oral flagyl
Oral Cipro

Yeast is always a constant companion…dealing with that as it arises. I’m also taking SubQ Ig, which is definitely helping, though I don’t always take it as regularly as I should (so I’m working on that too 😜👍).

Seriously though, I’m in a very rough spot, but the fact I feel slightly better this morning (and my blood pressure didn’t get any worse), tells me I should I stick with this plan for awhile and see where I am in a few days. After a days of being on this combo, my blood pressure should be normal by then…if it’s indeed working…if it’s doesn’t get too much better soon then I probably will go to the hospital for a workup…

(There’s always a chance my blood pressure could be dropping for another reason—like a problem with my kidneys or heart—but I’ve been down this path before and every other time it’s been an infection. I’m gonna go to Cedars today and check my blood to make sure it’s not kidney failure or something, but that’s unlikely. It’s possible this is happening as a rare side effect to the SubQ, but with my history all the evidence suggests infection—plus I was tasting little mucous sludge out of the bottom of my mouth around my teeth the last could of days (and I’m not tasting it so far this morning). It’s gross and usually comes up when I’m relapsing with this Actino infection—)

As time passes, it’s getting harder and harder to hold on with this infection…and less and less room for error…when I say I feel a little better than yesterday, only means a little bit better but I still feel like I’m at death’s door…

(It’s also possible I feel a little bit better because I dropped a liter of saline through the night, but I’m gonna hope more that I’m feel a little bit better because I’m on the right path—)


It was still dark out when I checked my blood pressure. If I’m taking it when I’m in bed, I like to do it before I move much.

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Big difference in blood pressure between left arm: 79/55 pulse 78, and right arm: 91/77 pulse 79

Wow I feel like death.

Not the kind of death that means today death, but the kind of death that means I better get myself on a better course immediately.

I’ve been putting off taking my blood pressure over the last few days, because I really didn’t want to deal with bad news and I was hoping I would just start to feel better.

Finally today I woke up and thought to myself, ‘ya know, I probably should check it…I might need to go to the hospital…’

So I checked it, but what really surprised me was there was a big difference in the two arms.

Then I laid in bed for twenty more minutes, and checked it again, and it was the same in both arms—approx 20 point difference.

I think I’m probably septic with either something that these meds aren’t covering (which is hard to imagine what I’m not covering), or (more likely), it’s a problem brewing from my compliance issues.

Meaning the antibiotics I have can fight whatever it is that’s bothering me, I just need to be super diligent about taking them.

In an ideal world, I should probably take my blood pressure machine to the ER, get admitted and have the super cool team that helped me last time work me up. I should probably maybe even take a day off of all of my antibiotics to try and get a positive blood culture (it’s hard to get a positive blood culture even before antibiotic therapy begins), so I can just to find out what this bug is,

but we don’t live in a perfect world because I have no desire to go to the ER today, no matter how deathly ill I’m feeling, until I’ve tried more of my options here at home.

So today’s attempt: super compliance.

(If I have to live at home with a bunch of pills and IV bags next to a clock to be compliant, then that’s what it takes.)

If in twenty four hours that doesn’t working, and there’s a super big different in my blood pressure,

Then I’m going to call my doctor and switch to IV Vancomycin. Try that for 3-4 days.

(Maybe this blood pressure problem is coming from something from my leg not healing right.)

Then in 3-4 days, if Vanco doesn’t work, then I’ll head to the ER cuz if none of the above work then I’m in super serious trouble 😢.

(There’s always a chance this could be fungal or something else really funky, but since I’ve walked down this path in the past I want to rule out the usual suspects first…)

Of course if it gets even worse over the next few days, then I’m headed straight to the ER. I probably should be going now anyway, but I prefer to avoid the hospital as much as possible…

(Left arm)

(Right arm)

My leg, still healing from the piece of skin taking out a month ago:

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21 February, 2018 08:23

Rita Kachru

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Dr. P—is this healing okay?

Do you think this is healing ok? I had this piece of skin cut out over a month ago now. Because of my immune deficiency it’s not going to get super red or pus out like a normal person.

I’ve been feeling really sick the last couple of days too, it’s hard to tell though if it’s because of this or just me being sick in general—

Thanks again for everything


(first one with a flash, second one without 🙂

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