Tag: co-infection

Havoc! And #LymeDiseaseChallenge!

Well, ladies and gents, it’s been a nightmare of a ride these past 10 days. Ironically, my last post was discussing the sometimes, most times, sporadic onset of symptoms. Then, tada! Totally happened to me. And the worst. I hadn’t been feeling all that great over Easter. I was having tummy issues, nausea, indigestion. And headaches. Really painful headaches. I missed a family member’s birthday celebration along with Easter since I was basically incapacitated.

Then it was Monday. And all hell broke loose. I got up and started getting ready as usual. About 25 minutes into my routine I began getting dizzy, lightheaded, and severely nauseated. Just like that. I laid on the bed for a minute, panting and hoping I wouldn’t throw up. I couldn’t go to work like this. No way, no how. I spent the entire day in bed miserable. I couldn’t eat. My stomach kept cramping and then the migraine made its appearance. Tuesday was yet an instant replay of Monday. No fever, but I could not stay upright. I have never felt this horrible before.

Wednesday I already had an appointment with my LLMD set. My mom had to drive me. I was afraid of a dizzy spell or whatever might show up next. I’d like to say my doc had all the answers. I wanted Doc to tell me that I could do *this and I would be OK. Alas, as it always is with Lyme and Company, not so much. My EBV is reactive and has been since January. I have a mycoplasma pnuemonia infection. I have one MTHFR mutation. I also now may have an hpylori bacterial infection which I am being tested for. My body is on the fritz. Overloaded by fighting on so many fronts at once, I don’t know, maybe my immune system has just given up. I was to stop my antibiotics, and I was directed to bed rest for the next 2 days through the weekend, returning to work Monday. Oiy. I told Doc that this is the worst I have felt since beginning treatment 2 years ago. Definitely scary and disconcerting. The rest of Wednesday was a replay of Monday and Tuesday. I swear, I haven’t slept so much in my life.

So here I am, resting. The nausea let up finally yesterday. I was able to eat a decent meal as well. Headaches are manageable. I feel like at least half a person now. Missing this much work had been distressing though. It worries me and while I want to plan for the future, what do I plan for? Right now, I plan for the Worst Case Scenario: I can’t work. Realizing many of my fellow Lyme sufferers are already in this boat, I am extremely grateful that I can still work and that I can manage these incidents for now.

While I am waiting to get my labwork back, Doc tested me again for EBV, mycoplasma, hpylori, thyroid (I have Hashimoto’s) along with ATP, CD57 and Lyme, I am wracking my brain about what I can change on my side to make things better. I definitely need to detox better and more. I think it is time to make a serious diet change. And most importantly, I need to embrace the fact that I am chronically ill and start working with what I gots. As the Indigo Girls sing, “What makes me think I could start clean slated, the hardest to learn was the least complicated…”

*you know, a pill, a diet, a one stop shop cure

P.S. My pretties, please do not forget about www.lymediseasechallenge.org and check out Dr. Oz and his segment about The Lyme Disease Challenge!  #lymediseasechallenge

www.lymediseasechallenge.org
http://www.lymediseasechallenge.org

I hope it is a pain free day – B

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Mycoplasma, Anyone?

The Challenge!
The Challenge!

So, at my doctor visit a few weeks ago, we decided to retest for co-infections. I was tested in March 2014, along with the test for Lyme disease. At that point no other infections were showing. Now, two years later, and I am still feeling like every day is a real challenge as far as symptoms go. Dr Horowitz, in his book, Why Can’t I Get Better? , examines the possibilities of other infections going on along with the Lyme. A multisystemic illness as well as approach to treatment.

We decided to  check again for the big 3, Bartonella, Babessia, and Ehrlichia.  We also decided that we check for Candida, Mycoplasma, and the MTHFR mutation. I brought these up based on Dr. Horowitz’s book. Now, in September, my doctor wanted to do a through genetic DNA test. This test would give us info on several possible MTHFR mutations, it would reveal how well I process certain medications, and it would help us know what medications, both antibiotics and pain meds, are best for me. But the insurance denied such shenanigans and with my looming deductible of like $1,200 to meet first, well I had to pass on that test, unfortunately. At least for now.

Anyway, back to this most recent visit and blood work. Results are in: none of the Big 3 were positive. No Candida issues. Cool! But, I do have Mycoplasma, reactivated EBV, and an MTHFR mutation that hinders my processing of B vitamins. Ok, ok.

I won’t lie. This information freaks me out a bit. Actually, a lot. I mean I know many people are dealing with co-infections. It’s just damn. Lyme bacteria is complex and intelligent enough on its own. Now, add Mycoplasma pneumoniae to the mix. This is the bacteria that causes walking pneumonia. And then the EBV is active, the virus that causes mononucleosis. I’m basically hosting a crazy party in my body, and I didn’t even get an invite. Excuse Me?!?

Now what? Honestly, I’m not sure yet. My doctor has this extremely annoying system where you go for your visit, then do your blood work, then wait 6-8 weeks for a follow-up appointment wherein we discuss the lab work from   2 months ago. Makes really no sense to me but then again, I’m no doctor. What I am trying to say is, she didn’t change my meds for now and I won’t see her until April. Then, I guess we talk about the co-infections.

However, a dear friend sent me Healing Lyme Disease and Coinfections by Stephen Buhner. He goes into great depth about all of the mycoplasmas of which there are several, and how to treat verbally. Some of what he goes through is the details about how this bacteria works on cells, etc. This part is very detailed and I am pretty lost. From what I have read, this bacteria is also extremely deft and intelligent as well. He states that the coinfections work synergistically. Again, WTF?!?

I’m trying to take this all in stride, research as much as possible, and understand what all of this means. Please wish me luck as I will most definitely need it.

Anyone else dealing with a Mycoplasma infection? And if so, how is it going and what is the protocol for treatment?

Please check out http://lymediseasechallenge.org   Today, March 1st, the Challenge Begins!!

Hope this finds you pain free and Happy. -B

Word Loss

**WARNING – THIS POST IS DEPRESSING. PLEASE DO NOT READ IF YOU ALREADY FEEL DOWN.

These past 2-3 weeks have not been good for me. I am struggling in every single area of my life: work, personal, mentally, physically. I have not been optimistic in awhile. Between attempting to cope with my cognitive issues, which have become many of late, along with the physical challenges of nausea and body pain, my personal relationships are indeed failing. I can see it happening, but I don’t know what to do to make it stop. Any of it.

I do my best at work. I know my attitude is not always optimal, but I am really trying my hardest. Communication is difficult even on a “good” day. And communication, well that’s kinda “my thing.” It’s something I take great pride in and something I have been good at my entire life. But not now. Although an overused analogy, my brain feels like swiss cheese. I can’t remember regular words such as pliers, consistency or ambiguity when I need these words. My short term memory is almost nil at times. I keep asking co-workers and my husband the same things over and over. I feel like I am slowly going insane. Not being able to remember, not being able to recall basic words while speaking, spelling words incorrectly all of the time is so very frustrating and aggravating. This proceeds to heightening my anxiety and my anger. I imagine that to some degree, this is what is is like to have the onset of Alzheimer’s.

And so, my negative persona and my overall hostility rises. I avoid conversations like the plague. I don’t want to talk because, to myself, I seem to make no sense at all. I imagine that others feel the same when I speak. I am alone. I feel so singularly alone in this.

There is no quick fix, and I get it. I have been very patient and open to any and all treatment over these past two years; I have diligently taken my meds. I do my best to keep my diet in check, I try to stay upbeat and optimistic. I am still working full-time. Yet, I still lose.

I still have the dreaded headaches every day. Joint pain. Every single day. I have made some progress with endurance but I still exhaust quickly. While, I think when in the midst of a migraine and nausea, “this is the worst!” really, the slow decay or what seems like decay of my memory and cognition is ultimately the issues that worry me the most.

For if I can’t use words correctly, beautifully, exacting, then who am I? Always one to rely on my wits and sarcasm, without these, I can’t and won’t ever find my way home, back to who I am. I know, I know. One day at a time. Like the Indigo Girls sing, “We’re sculpted from youth, the chipping away makes me weary.”

Right now, I am weary.

Peace. – B

The Snowglobe

SnowglobeLately, I have been struggling with the fact that my life has changed. When I first started treatment for Lyme disease, my mindset was that I get through this. I was willing to put in the time. I figured a year would be sufficient. I tested CDC positive for Lyme; I tested negative for the big 3 co-infections. Assuming that the results were correct, I set my mind to healing.

I still worked but my boss gave me the utmost flexibility to leave as needed and/or take absences as needed. I didn’t attend as many social events. I tried to get my proverbial plate as empty as possible. And, I made progress. I did. The backaches subsided, the intense daily neck pain finally went away, the migraines became less frequent, the exhaustion became manageable. All of this was great. Then, I guess I hit a plateau.

So, here I am. I am not 100%. Honestly, inside I feel about 40% of my old self. Outside, I think people actually see me as almost 80%. I am a great faker and a great lier when it comes to the presentation of myself to the outside world. I am sure this is the case for all of us with a chronic disease. But since school started this fall, I feel like I am backsliding. The extreme exhaustion is creeping back in.

I have started seeing my my life from the outside. It is a weird feeling. Does anyone else have bouts of this? I don’t think it is disassociative disorder, but maybe just parts of it. Sometimes, in order to get through the day and what it entails, I separate myself from my physical body. Creepy! No, not in a creepy way! When I do this, I feel like I can make it. It is as if I am managing my symptoms from the outside with less attachment to the pain and whatever discomfort is going on at that minute. The problem is though that I have been doing this for a few weeks now and it is starting to feel like I have two different lives. I just don’t know how to explain it well. Really, though, does anyone else have this going on or something similar?

It’s almost as if, when I do this, the separation, that I am looking at my life and my actions in a snowglobe. Sorry, it’s the best analogy I can think of! 🙂 I am guessing this is a coping mechanism the brain sets up. However, I just don’t want it to become a rabbit hole. Also, I am concerned that this snowglobe effect will become a crutch in the sense that at this point in time, I am not dealing well with the fact that I am now 19 months into treatment and I have hit a wall. Like everyone else with Lyme and chronic disease, this wasn’t my PLAN!

I am hoping all of you out there are having better days than not. Drop me a comment in regards to this thing I have going on with me mentally if you feel comfortable doing so. I appreciate any and all comments!

Happy weekend, pumpkins – B