Lyme Flare Recap and a Small Rant About Diseases “Existing”

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise, I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!


Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

Advertisements

5 thoughts on “Lyme Flare Recap and a Small Rant About Diseases “Existing”

  1. *hugs you* Are you me? XD Your symptom list of **extreme** cognitive dysfunction, memory loss, confusion, etc is just what has been happening to me over the last few days (but I am not flaring! :O) It’s so had to do anything right when things are just…so confusing! @__@ I feel like my IQ has dropped so much. XD

    I have absolutely horrible time with florescent lights, but not so much with sunlight? I’ve heard of people with Lyme having bad times in the sun, so that’s probably what’s going on! :O Haha, I’ve had such a bad time recently that I actually edited the wikipedia article on “fluorescent lamps and health” to include it. Sunglasses everywhere FTW! But if it’s you in the sun that’s the problem, I doubt they would help…:( *hugs*

    Ugh, I don’t know why people find the need to write to people on their personal blogs and tell them their diseases ~don’t exist~. :( It’s so hurtful and offensive, especially when you’ve been through everything you’ve been through. Do they think people don’t do extensive research to make sure this is what they have? At least for me, I read everything I could about Lyme to make sure I had it–and I’m still reading today. PEOPLE KNOW MORE ABOUT THEIR DISEASES THAN THE PEOPLE WHO ~*DON’T BELIEVE*~ IN THEM. ;_;

    Also I posted this on my facebook, but relevant here? I just read it today at mom’s office before my brain broke, and I think it’s kind of funny and horrifying at the same time:

    “That day, a physician called back to tell her that the test had, indeed, come back positive. Nonetheless, “intellectually, I don’t believe your daughter has Lyme disease,” he told Pat Smith. He didn’t know what was wrong, but he wouldn’t treat for Lyme. “Intellectually, I don’t care what you think (…)” Smith replied.” – Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub

    (Also the physician only called back when she threatened to sue XDD)

    Made me kind of laugh and cry at the same time ;)

    And yaay, all the spirochetes, mommy and babies. ;__; I put one of the babies on the top of my cane. He fits too well, but looks adorable.

    I hope you start getting some cognitive function back soon. It’s so hard to function at all when that’s going on. But so glad you weren’t bedbound! *cheers*

    Like

    1. No, it’s nothing to do with my eyesight (though I obviously use sunglasses!), it’s just.. I can’t be in it? I know Luna says it makes her feel like her organs are on a slow roast and I think that’s an adequate way of describing it. It just tends to focus on my joints for some reason.

      Flouroscent lights are terrible. I’ve been to doctor’s visits where I had to have them put me in another room because I couldn’t even walk into it with the slight flickering that they do–I want to say “are you people TRYING to give me some type of seizure?” Just, no! :( That’s so impressive that you edited the article–I’ll have to check it out in a moment!

      “PEOPLE KNOW MORE ABOUT THEIR DISEASES THAN THE PEOPLE WHO ~*DON’T BELIEVE*~ IN THEM.” Indeed!

      Ah, I did see that! Don’t people understand that these illnesses go far beyond what we “intellectually” conceive? If they worked the way we wanted them to, we’d have an easy cure right now.

      Aww! I’ll have to see if mine fits on my cane, too. ;) Don’t worry, I’m much better now that the Lyme flare has wrapped up!

      *hugs back* Always so nice to see your comments <3

      Like

  2. Thank you so much for your replies to my posts, it is so wonderful to find people who understand this!!! NO ONE can understand it unless they have lived it. Dr. Black at Hunter Hopkins is sending me a lab order for another battery of tests and she is including Lyme, but I may also ask for Bartonella, etc. I believe my doctor uses the Mayo Clinic lab, I hope they are good enough to catch these little buggers! One of the weird things that has been happening is that I have small petechial hemorrhages all over my body. Some doctors have brushed them off saying they are just little angiomas and are genetic, but they are NOT- they change all the time, coming and going, getting smaller and bigger, moving around. I saw somewhere that this might be bartonella, have you or anyone reading this experienced or heard of this? It is DEFINITELY not normal, my capillaries are leaking and the doctors don’t care! It constantly amazes me how incredibly hard it is to find a competent, caring physician. BTW, I just finished reading “Chronic Fatigue Syndrome, A Novel.” It was actually really good and a nice, easy, fast read with a satisfying ending. The writer did a lot of research for the book and it shows. It’s actually about the ME epidemic and govt. coverups, etc. Nothing like living in a real-life John Grisham novel!

    Like

    1. Hello again. :)

      No, I’m sorry, there is scarcely any laboratory that is equipped to pick up Lyme disease as well as IgeneX. The coinfections show up–even if they’re there!–less than 20% of the time. :( I’ve tested negative through regular labs soooo many times, its disgusting, but I’m such an obvious clinical case (all the symptoms) and have had far too much exposure. You need an experienced doctor, an LLMD, to guide you through those possibilities. It is their specialty and because of the controversy (you think CFS has controversy? wait til you read about Lyme disease) most doctors will tell you it’s impossible for you to have chronic infection when the tests are negative, and refuse to treat. Because “long term antibiotics are dangerous,” even when you have a potentially fatal infection, or something. :\ I’ve been on treatment for five months and I’m no longer bedbound. :)

      Since you mention those spots, YES, I have bartonella and YES, I get those spots. They fade out then reappear in different areas? Yup! Especially on my feet and my chest. I do get broken blood veseels, but this rash-thing is different. You might also want to research Rocky Mountain Spotted Fever and see if that looks familiar? It causes more spots, even though they’re not mandatory, just like one doesn’t need the bull’s eye rash to have Lyme.

      Google LymeNet, they have a huge forum and you can discuss possibility of infection, where to get tested, etc., and they can help you find a skilled doctor in your area. :)

      Like

What are you thinking?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s