Lyme and a Coconut

chronic lyme disease with a taste of nut

Lymetastic! (and Other Sarcastic Ambiguous Updates)

Perhaps it’s not the best idea to write a blog entry when you’re having a really crummy day. Or maybe it’s the ideal time; I don’t know.

Once upon a time I kept a blog for many moons and this was before I understood better what internet privacy meant. I would spew my emotions onto the blog and not quite understand that it wasn’t appropriate. That blog doesn’t exist anymore (thank goodness), but I still struggle to maintain a good emotional balance when I write a blog entry.

Given that Lyme and it’s co-infections, Bartonella and Babesia, and the rest of their cohorts, do awful things to your psychological makeup – not just your physical – I have had an especially hard time not posting my whining and complaints. I don’t want to show the ugly parts or come across as self-absorbed and naval-gazing.

There comes a point, though, where honesty needs to unpack its bags and stay for a bit. How can I educate you about chronic lyme, MSIDS, Bartonella, and what I am experiencing if I do not explain the difficulties? The dark parts? What Kara Tibbets labeled, the Hard?

So first let me give you a rather dry, big-worded update on how the second LLMD appointment went and then I will go into my first real day of … da da daaaaaa…. herxing (which might be a second blog entry unto itself).

Lymealicious

I visited Dr. W on July 23rd. My car again overheated on the way up, costing $1000.00 for a new radiator and transmission, all of which cost less than the very appointment I was going to. Ugh.

It was a difficult appointment. My husband joined us on speakerphone and I was grateful for that. Dr. W explained the test results he had done from the first appointment. The various labs had done their magical thing and results were in.

The following results will make sense to those who know chronic lyme and are familiar with how to diagnose it via “bands.” I’m including the details for such a person’s benefit. There is an excellent page explaining how to understand the IgeneX test here. Please do read, even if you don’t have an interest in the fine details.

 

On the IgG test, my double positive band was #41, my singular positive band was #58.

On the IgM test, I was IND on bands #31 and #41. For the layperson, band #31 is most specific for lyme (according to my LLMD) and according to the web site I directed you toward, band #41 is usually the “first to appear after a spirochete infection.” As the site adds at the end, many LLMDs’s – mine included – determines IND bands as positive. So, all in all, I was positive for chronic lyme according to my LLMD’s reading of the IgeneX lab results.

We discussed the worst of my symptoms as of right now – the psychological and neurological. My husband gave some good input on my “Bart rages” as they are called in the world of Bartonella. We discussed the rages, depression, confusion, cognition problems.

Next, we talked about my gut. It’s always back to the gut. After all, it makes up 70% of your immune system and without a functioning gut, your body will shut down bit by bit. My gut has been in some form of crisis since infancy and it’s not wonder that it’s so damaged today at the age of 37.

As a child, you don’t really tally up the number of times you have trouble in the bathroom. Sure, as a toddler, you are forced to drink prune juice every morning to make you “go,” but that becomes a funny family joke as you grow up. Feet dangling as you sit on the toilet at the age of 3 and 4, making up stories about the wallpaper staring at you a few inches away. And you hardly remember the bathroom issues of your teen years because your whole body was going through a mess of a time – hormones, psych drugs, more hormones. And by the time you hit 20 it just seems normal that you have bathroom issues. Stomach problems just run in the family. Don’t they in all families? It’s just the way it is.

Well, not so much. Having a party in my stool sample (sorry, I’m getting very in-depth here; it’s for a reason) are Clostridium spp, imbalanced flora, abnormally high fecal lactoferrin which, when elevated is assoiciated with Inflammatory Bowel Disease as Ulcerative Colitis or Crohn’s Disease. The “..assessment of fecal lactoferrin levels enables distinction between IBD and non-inflammatory IBS. Such distinction is critical because, although IBD and IBS may share some common symptoms…the diseases are treated quite differently. IBD may become life threatening, requires life long treatment and possibly surgery. In contrast, IBS is often effectively treated with dietary restrictions, stress reduction, and medication” (Doctor’s Data, Inc 1999-2015). So my GI tract is inflamed.

The lab results also read, “one or more of the expected or beneficial bacteria are low in this specimen.” Dr. W kept throwing the words “lactobacilli” and “bifdobacteria” around as if I knew what kind of yogurt they were. I found out they were good bacteria that we all need in our gut and, despite taking a powerful probiotic for over a year, I had a very low count of those suckers.

Ending my talk of fecal matters, I have a high level of Calprotectin which indicates the presence of neutrophils and inflammation in the GI mucosa. This “Cal” and the above mentioned “Lacto” both differentiate between IBS and IBD. We’re keeping a close eye on this.

Dr. W was particularly concerned/interested in why I had “no fatty acids in [my] red blood cells.” Apparently, this has to do with a propensity for heart disease (which runs in my family). The lab results read: “the relative and/or total amounts of Short Chain Fatty Acids are abnormal in this specimen.” In the narration of my lab results, it does mention I am at risk for heart disease, although all the things the typical doctor would test for are normal. However, your normal complete blood panel does not measure the arachidonic acid level which is abnormally high in my case and elcosapentaenoic acid which is abnormally low.

Continuing to quote things I don’t quite understand, I’ll also mention the narration says, “The EPA/DHA ratio is lower than expected…the AA/EPA Ratio in this sample is higher than expected. This means that there is an undesirable preponderance of  omega-6 to omega-3 fatty acids.” He gave me a huge Omega supplement that looks like the golden egg the goose laid. I think I’ll improve on that “preponderance” soon.

Adding to the inflammation argument, my AA/DGLA ratio is “higher than expected…consistent with a pro-inflammatory state.” The EPA/DGLA ratio is low.

Man! High, low, make up your mind!

Dr. W and I had a back and forth conversation on whether it was important to know the other illnesses I was somewhat positive for – Lupus, Hashimoto’s, almost-Crohns. He’d rather not go into those labels and details and, instead, talk about treatment. I understand his reasoning – he knows that people with chronic lyme/MSIDS can dig deep tunnels of insanity and freak out at the mention of those other illnesses. Especially when you factor in co-infections like Bartonella, Babesia, and the others. However, I think it’s useful to know, for instance, that I have markers for Lupus and Hashi’s and that I’m borderline-Crohns. Call me morbid, but I like to stay informed. Dr. W wanted me to rest with the diagnosis of “Chronic lyme complex with various autoimmune disorders” because he says, “your body is just attacking itself all over, why focus on one area?” I’m okay with that, but when it comes time to document things for medical/legal purposes, I’m taking names, thank you very much.

Which brings us to…

Treatment (a.k.a. “I’m going to take all that?)

Treatment for chronic lyme/MSIDS can be as diverse or simple as the patient wants to make it. I’ve learned that when you are starting out, you just have to try something. Some treatment is better than no treatment. Each LLMD will lean toward his own “hue” of treatment, so to speak. There is antibiotic treatment. There is herbal treatment. There is the ozone therapy, infrared therapy, and a host of other alternative therapies. Many lymies end up utilizing a little from each hue. A bunch of rainbow lymies – that’s what you turn into.

My LLMD studied under Dr. Jemsek, one of the world’s premier lyme doctors and one who was spotlighted in the documentary, “Under Our Skin” (a must-see). He coined the term, “pulse therapy” which means that you hit the lyme buggers hard with a bunch of antibiotics on certain days for a few weeks and then you give your body a reset and take a few weeks off.

Therefore, my regime is as follows: Doxycycline, Clindamyacin, Rifampin, on Mondays, Wednesdays, and Fridays, and Flagyll on Mondays and Wednesdays. Off on weekends. Take the antibiotics (or “abx” as I will henceforth dub them) for two weeks and then take two weeks off. You rest the body and then take them again for two weeks on, then two weeks off. And so forth.

The reason for the pulsing is that long-term abx use is known to harm the body if not treated carefully. In addition to pulsing, Dr. W (and all LLMDs who pulse) give you a healthy dose of an anti-fungal agent such as Diflucan so I’m taking that on Thursdays and Fridays of all weeks as to prevent yeast overgrowth – otherwise known as candida which those with chronic lyme usually already suffer from – and I do.

I’m also taking a prebiotic, a probiotic, and something to aid in detoxifying the body (in pill-form; I have to do things to detoxify in general).

So that’s a lot of abx. I’m also taking a host of supplements to counter my low numbers of certain minerals and vitamins.

It’s funny – you give someone with this bad of brain fog and cognition trouble a laundry list of pills to take and sort and organize and you’re asking for trouble!

The first week I was on only the supplements. I suffered from a great deal of physical and psychological discomfort the first four days as my body experienced die-off or herxing symptoms (remember that fun word? Keep it in the front of your memory because we’ll soon be returning to it) but I was overjoyed and somewhat astonished to find that this past week, days 5-8, I noticed a remarkable improvement of mood. I felt less anxious, less depressed. I actually think I was in a good mood for three days. That is unheard of lately. Me smiling and feeling lighthearted for three days? By this past Friday afternoon, though I felt incredibly crummy in a physical way, I felt so light and happy! I was ecstatic!

I heard murmurings of the lithium mineral helping to lower my anxiety and depression. I heard the rebalancing of omega fats might help my mood. I didn’t believe these things, though, not deep down. I’d taken scores of antidepressants since 1996 and nothing ever worked. Why would these pills?

But we are now working with my body, giving it what it lacks – not manipulating the chemicals so it thinks it has what it doesn’t.

What I’m trying to say is that yesterday afternoon it occurred to me that I had not felt that “naturally” happy – maybe ever.

However, there is always a bump on a smooth road. I don’t mean to sound like a pessimist, but the reality of the Bartonella raised its ugly spiraled head last night as depression made the happy lights crash down around me.

Day 2 of abx and day 8 of supplements brought both a fabulous morning and afternoon and one of the worst nights in a long time.

Today, day 9 of supplements and an off day of abx, I spent herxing like never before.

I am ending this blog entry now and must add a plea of forgiveness.

I’m an expert typist and am very good at grammar and spelling. I majored in English, remember, and can be called one of the grammar police around my kids. No doubt about it.

But while writing this blog entry, propped up in bed, taking frequent bathroom breaks, detox bath breaks, curl up in a ball and hide from light and noise breaks, while my eyes grew bleary and my sinuses screamed, my fingers sometimes slowed down and I often forgot my train of thought. Words flew past me like wild fireflies running for their lives. You can’t tell because all you see is a pithy blog entry that took way too long to read because of length, not because you took 6 hours to read it just like I took 6 hours to write it.

All that to say – my eyes can’t handle revising anymore. I get dizzy scrolling up and down and fixing mistakes. So please forgive this English major and writer if there are sections that don’t make sense.

And if you find that everything makes sense and you are tempted to say nothing is wrong with my brain at all, don’t be silly…please don’t say that either because you don’t know how hard I pushed this brain to make sense of things. My head and right arm are spasming and jerking as is my left leg. My right eye is becoming a bit muddled in the center.

I’ll try not to linger on those disappointments if you forgive the occasional nonsensical item. Deal?

And now, I’ve got to close the eyes and rest the body.

Thank you for reading the honesty and the Hard. That’s all part of the story. How can we share in the celebration of a victory if I never describe the battles?

— lymie out…

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