IVIG can help eradicate Bartonella infection: My success thus far.

Photo of the sun setting into the Pacific ocean at dusk in San Francisco, California, USA

estimated reading time: 5 minutes 12 seconds

After almost seven years with this infection, I think the bartonella may be gone for good.

If you recall from this previous post, I talked about how my health was either about to nosedive or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened?

Since April, I’ve been having none–none–of those symptoms I talked about eight months ago.

My favourite part of this (aside from the “won’t have bartonella-induced damage as a possible cause of death” thing, of course) is that I finally have my personality back, without a lapse every five or six days. I am emotionally stable! I also think that toxoplasmosis may have been playing a far greater role than my doctors originally thought, because my level of extraversion is also completely gone and I am now a solid INFJ instead of the ambivert I’d been for most of my life… But that’s a topic for another day.

As I said the first time the bartonella was painstakingly beaten into remission, it’s been known to relapse, sometimes even up to 15 years later. But for right now? It’s over.

It’s over it’s over it’s over.

 

And now, to elaborate on all the things that IVIG has done and is doing:

  1. Eradicated all strains of bartonella
  2. Finished off lingering rickestsia, ehrlichia, and toxoplasma infections
  3. Fighting Lyme disease bacteria and mycoplasma pneumoniae;
    • the two are clinically indistinguishable and I’ve tested positive for both, so who knows!
  4. Since April, my pain levels are no longer steadily worsening;
    • seemingly the result of removing bartonella?
  5. I can now reply to e-mails, comments, and other messages once or twice a week instead of a few times per year.
  6. I CAN READ BOOKS AGAIN!
    • Ever since the M.E. came out of remission in 2007, I’ve only been able to read books for maybe a combined 2 weeks per year. I did have some better periods while on antibiotics for Lyme & Company, but since stopping treatment three years ago I’ve had to rely on audiobooks, only. People with M.E. have eye tracking problems, and I guess some of that must be infection and/or immune mediated, for antibiotics to have helped at all, and for IVIG to have helped so dramatically. Subsequently, my ability to read shorter things has also magnificently improved, but. Books!!!
  7. I CAN EAT RAW VEGETABLES AGAIN, as well as a much wider variety of cooked vegetables, too!
    • This is something I haven’t been able to do in at least seven years because I just couldn’t digest them. In fact,
  8. ALL symptoms of autonomic neuropathy have either improved or stopped worsening, including:
    • peripheral neuropathy
    • trouble swallowing
    • heat/cold intolerance and dysregulation
    • gastroparesis and other digestive problems
    • blood pressure dysregulation
    • heart rhythm abnormalities
    • and urinary problems (i.e. difficulty sensing bladder fullness, inabilty to empty bladder, inability to start urination and/or completely empty bladder)
  9. I no longer have regular symptom patterns of Lyme (and/or Mycoplasma).
  10. I no longer need nasal sprays to prevent sinus infections, except during the week before infusions.
  11. I no longer need topical medications for skin infections, except during the week before infusions.
  12. I’m no longer visiting the emergency room for uncontrollable dehydration every two months.
    • This is partially due to the extra saline I get after infusions, but the lessened infection load is also a huge factor. Even if I’ll always have difficulty staying hydrated because of the M.E., at least now I can keep myself out of hospitals!
  13. I’m able to stay upright for long periods of time without autonomic mayhem,
  14. Sit up using my own muscles for longer periods of time without needing to lean on something, and
  15. Be out of bed wayyyy more than my previous 1 or 2 hours.
  16. I am no longer progressively getting worse.

So there you have it. Immunoglobulin replacement therapy has been life saving in every sense, to my actual physical survival and my quality of life, especially. I know we started this at just the right time… It’s pretty obvious to me how bad things were about to get. But I’ve spent the past three years coping with that, so there’s NO need to reiterate at this time. I got the absolute most out of what that experience had to offer, and I know I will get the most out of whatever is to come.

Because now things are different. I am definitely out of the relapse.

What amazes me.. well, not necessarily the most, but amazes me regardless, is that I reached the point where I didn’t have to spend my every waking moment afraid of making the wrong choice. I learned to truly trust my intuition, even when it seemed to be going against everything that actually made sense. Yes there were worries, yes there were concerns, but after they’d moved me towards action and I acknowledged them as valid, I let them be. I didn’t try to stop them from existing, I just.. witnessed them, without taking them seriously, without trying to “figure it all out” before I decided I could relax. And everything still worked out, and worked out more perfectly than I could ever describe. Imagine that. This has been my way of life for many years, and this quote sums it up perfectly:

“Ask your higher wisdom if it is not true that without worry
you would have arrived exactly where you are now, and more pleasantly.
Worry and fear are not tickets on the express train.
They are extra baggage.
You were going that way anyway.” (source)

This present stage is so exciting. Every part of our body (well, almost) is constantly regenerating, and soon, my body will be made of so much more adequate material than it has ever had before, thanks to all the changes I’ve been able to incur.

Photo of newly sprouted grass with the following caption: The things you eat today will make up the cells of your body tomorrow. Be mindful of giving your body whatever it truly needs to function.

The end point, here? Follow your intuition. It doesn’t exist to necessarily keep your body from dying, but it’ll make sure you learn all your bullet-points–and probably enjoy the ride–while you’re still here.

a rainbow at night

“When conditions are sufficient, things manifest.”

Photo of a white gardenia flower with raindrops on its petals

estimated reading time: 6 minutes 17 seconds

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

Help Unwanted, Motivation Optional

Photo of opera theatre hallway while people meander about during intermission

“It requires wisdom to understand wisdom. The music is nothing if the audience is deaf.” Walter Lippmann

Every time I go to write about something I’ve learned, I’m confronted with the realization that my writing about it won’t actually matter to anyone who isn’t ready to hear it. So maybe I’ll write about that, instead.

You can’t give people anything that might improve their life until they’re ready for change. You can’t show people there’s a cliff up ahead if they refuse to look down. You can’t help people discover anything they don’t want to see. You can’t convince anyone the truth will be easier to deal with if they’re attached to a lie. You can’t help anyone, unless they want to be helped. Continue reading

ME vs. CFS vs. SEID Information & Advocacy Chart

  • Click on the chart for the full-size version, as your browser may have resized the one below.
  • If you’d like an extra large version (say, for special eyes), click here.
  • To download as a PDF file (which I optimized for printing), click here.
  • For Facebook upload onlydownload this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
  • On Twitter? Click here now to Retweet/Quote/etc. the graphic
    • If you try to share the image anywhere else and it uploads blurry, link to the direct image.

ME CFS SEID chart via arainbowatnight

Continue reading

A Very Special Way of Life

© a rainbow at night

I’m not used to living this kind of life… It’s so different from what I was supposed to have, so different from what I was used to…

I barely see anyone. I barely go anywhere. I have no local friends and I think I’ve permanently lost my ability to drive. Disease puts me in bed an average of 23 hours per day, or at least to some area where I can lean back and my legs are propped up to ensure proper circulation. When you tell people these things, they immediately pity you and interpret it as a bad kind of life, or a sad kind of life, “oh you poor thing…” But Continue reading

The Parts of ME: What If It Were You?

IMG_20140617_225939Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.

Continue reading

The Parts of ME: Introduction & History: How did we get here?

IMG_20140617_225939

It takes a long time for me to integrate new information.

And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.

Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.

All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.


The Parts of M.E. (Upcoming posts)
  1. Introduction & History: How did we get here?
  2. What if it were you?
  3. Does “Post Exertional Malaise (PEM)” exist in other diseases?
  4. The IOM Committee Speaks Out
  5. The Problem with M.E.-only Advocacy, and How SEID May Help
  6. Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
  7. The ICC or CCC as an M.E. definition: Are we promoting bad science?
  8. Why do we advocate?

Continue reading

Explaining to Those with “ME/CFS” That They Cannot Have Both

ME CFS SEID criteria-only

Here are some things I used to think about people who tried to tell me chronic fatigue syndrome (CFS) was different from myalgic encephalomyelitis (ME):

  1. They’re just trying to cause a problem where there isn’t one.
  2. They’re “those advocacy-type people” who “make a big deal out of everything.”
  3. They just want it to sound more serious, when it’s actually the same illness.
  4. It really doesn’t matter what people call it; they just want their disease to be “special.”

Yes, I *legitimately used to think these things.*

Have you ever wondered why people continue using terms like “ME/CFS” “CFIDS/ME” (and now “ME/SEID”), despite being confronted with information that clearly details their differences? Ever wanted to inform someone you care about, but aren’t sure how? Continue reading

It’s not easy, it’s just Now.

The Nutcracker

“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)

When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.

If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.

I’m not completely certain of the point for me writing this… I know the things I lived, I don’t need further documentation. I don’t imagine they’d be all that interesting to anyone else, in the same way your baby photos are only important to you, and slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.

Even if I were to sit here and explain how none of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me (and that for too many years I gave to myself, as well)… “Sick people” don’t live life, they wait until they’re not so sick anymore to start enjoying themselves again, right? They wait until they’re better, don’t they…? (Not so much.) Continue reading

The Killer in the Crowd

♪

“Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

All right. Something I never considered the IVIG would do (and luckily so, or else I might not have went forward with it!) was that it would so very obviously do the one thing I’ve avoided doing at all costs for the past two years: Wake up my immune system. Because that would re-activate the bartonella like it has every time in the past since I contracted this parasitic-bacteria.

And that’s exactly what it did. Continue reading