Confused-- Do you think I'm okay?

Hey everyone, been a while since I posted! This may be kind of long but I would REALLY appreciate anyone taking the time out to read it. I've been sitting and thinking about this without having anyone who knows about Lyme disease to talk to about it for a while now.

I officially went off my birth control because I strongly suspect that I've actually been reacting to it for the past year I've been on it and it was making me sick (I've been on the pill and the patch before going on the ring last and both gave me physical and psychological problems-- patch got pretty severe after being on for about eight months).

Now, I'm still waiting to hear back from a naturopath, and in the meantime I've been thinking a lot about how sick I've been and when, and the types of sick that I am, if that makes sense. And I'm beginning to confuse myself. I'm questioning whether I still have Lyme, or if I do, if it's actually posing a threat at all.

I was 14 when I got an EM rash on my back. I never saw it for myself, but my parents did, and after showing them pictures of the EM rashes they said it looked exactly the same. Around that time we figured I kept getting heat stroke because I was weirdly sick like that a lot, but it was 36-40 degrees Celsius where we were and I was used to the northern Canadian temperatures of 10-20 degrees.
I was pretty healthy up until I suddenly developed allergies a year later. This, according to the allergist I saw, should have been explained to my parents when I was born as being likely, since I was born with oral thrush and eczema. My grandmother also has a huge amount of allergies, and I did have some slow allergy development beforehand (milk intolerance, allergic to peas, medication allergies and environmental allergies). The food allergies that developed, although a lot and all very sudden, weren't that surprising even at the time.
I've been dealing with endometriosis since I was 11 years old. I ignored it for a long time, unsure what a healthy period was and figuring everyone's was just terrible. Aside from these things and a touch of exercise induced asthma, I had been pretty normal.

I got violently ill about five months after being diagnosed with my allergies. It was terrible, left me bedridden. But, after a number of doctors dismissing it and not knowing what it was, I clued in myself that it was clearly because I was still eating things I was allergic to from not reading labels properly and not taking my allergies as seriously as I should have been. I was also living in a dusty, mouldy home with cats.

After I cut off my allergen exposure, I went back to being pretty physically normal. I could relentlessly pull all nighters and still function without feeling like I needed to be hospitalized. When I was 16 and a bit, I started getting very, very bad leg pain.

Pain wasn't entirely new to me. I had weirdly sensitive shins and calves ever since I can remember. I had a back injury as a child too and that left me achy for a long time. I also have TMJ syndrome (hugely runs in my family) so back and joint pain wasn't particularly weird either. These pains were more intense though, sharp and would cause me to not be able to support myself. But they also would improve with movement half of the time. I got tested for arthritis-- came back negative. Eventually they just said it was fibromyalgia and left it at that.

The pain wasn't constant by any means. Sometimes it seemed to come on randomly, more often than not it was clearly triggered by things like sleep deprivation, drinking too much, and work stress. When the attacks were bad, they were pretty bad, but would always respond to taking a couple ibuprofen and toughing it out. Again, aside from this, I was pretty normal still. Sometimes I'd feel weirdly nauseated or just generally unwell, but that could be chalked up to my endometriosis effecting my menstrual cycle easily as well. Plus I was under a lot of emotional stress.

We found out when I was 17 that I had about six pilonidal cysts (don't google image them, trust me) that stemmed from my lower back and down. When my doctor was looking at it and I told her that whatever it was-- I thought it was eczema because I couldn't see-- it was there for at least a year and a half, she was amazed. They were deep (what they do is literally create like a little sinus cavity that tries to connect to organs like the bowel and stomach) but they were clean. She spent a few minutes looking at all of them and was still surprised that they hadn't, you know, started to kill me.
My body handles infections miraculously. This was just an example of something I was all ready well aware of about my body. As a young child I started getting UTI after UTI. Eventually I got tired of taking antibiotics when I could no longer have the liquid kind, and would hide it from my parents. Surprisingly, with the most aid being just some cranberry juice, my UTI's would all go away on their own. Thrown in a few bouts of tonsillitis that were pretty brutal that I also chose to avoid antibiotics for after the first time, and every time I've had tonsillitis since it kind of just... Goes away. I'll gargle salt water if it seems bad and it's just gone with the wind.
Cavities? Never even really had one. I have had them start to develop, would do some extra brushing and they'd be gone. And I went through some baaad stints of oral hygiene-- or lack there of. Once went two weeks without water and as a teenager secluded to a land free of bathing or caring about it, along with some bouts of depression where my oral hygiene got neglected. My body has always fought off infection like no tomorrow. Similarity with cold and flus as well.

It's largely this that makes me wonder: do I even have Lyme any more? And if I do, am I still affected by it? Does it even pose a threat to me?
I've had antibiotics, not to treat the Lyme when the EM rash showed up (that got ignored), but for other things like surgery afterwards. And, if I think logically about my health and the time line of it-- I've only been really sick since I started going on hormonal birth controls trying to treat the endo (which actually didn't do much of anything for the endo). That coupled with college exam stress and work stress this year sent me into these brutal symptoms. Which I also noticed were most intense when I put in fresh birth control. Just last year I was markedly healthier. When I wasn't on birth control I was able to work out vigorously for an hour or so at a time on a daily basis, work, think straight and sleep well (or at least well enough. I am only twenty, haha).

I'm off birth control now, like I mentioned, and I'm still not feeling well. But it's only been about two weeks, and I had to deal with my endo rearing it's ugly head in response for a solid week of that time. My level of sick right now still isn't as bad as it was. I'm having stomach issues but they're not severe, more really annoying than anything. Some headaches, a bit of fogginess, but that's it. I haven't even been detoxing daily like I was having to before just to be able to think straight. I'm wondering if half my problem isn't because I'm so scared of the thought of dealing with Lyme disease, too.

So, yeah. I've been confused and thinking a lot.
If you read all of this thanks so much, really. I needed to talk about this to someone, anyone, who may know more about what I could be going through and facing. I'm hoping the ND gets back to me soon-- Lyme treatment or not-- because I do need to find a safer way for me to tackle my endometriosis.

Please let me know what you think, if you have any ideas, information or experiences. Or just.. Anything! Thank you again to everyone that sat through this all. :)

I think it's important to treat the whole body. Lyme effects us in so many ways. Hopefully, your Dr. will get back to you soon and you can get on the right track for healthy healing!

I'd love to read something about endo if you do find it again! For the time being, endo is definitely my most severe problem. Also you definitely get a gold star haha. You get like, five!

I wish testing wasn't so expensive. I think that's what's throwing me off, is not... Having clear confirmation of it, you know? Like yeah, I had the EM rash and that's supposed to be the skin version of Lyme or whatever. But even that is weird to me because I never saw it for myself. I can't even remember my parents looking at it, though they say they kept checking it. So, it's weird, and half of it doesn't seem real to me and then the other half of me is afraid of dealing with it and what could happen if I do have it.
There's also some stuff that's kind of weird like, I hear a lot about how people with Lyme are often vitamin deficient and I think I am definitely not. I had my levels checked the last time I was in the hospital and they said everything was totally fine, someone mentioned that they'll say that even if things are too low for how my body wants them. I started taking some vitamins in small doses lately and my body is noooot having it, and I think it escalated my stomach issues. I seem to just be peeing all of it out. Read online that the discomfort around it and the peeing it out could mean that I've all ready got enough in my system.
Plus some stuff has also improved. I used to get terrible migraines as a kid, now they're few and very far between. I maybe get some eczema once or twice a year and the amount I get is so tiny that I often just leave it alone, compared to before (I'm timing things out as before and after EM rash by the way) when I even once had head to toe eczema. My asthma has hugely improved, where I used to start getting asthmatic over very moderate activity and would have more serious attacks easily plus stress induced asthma at times, the last bad asthma attack I had now was two years ago after running hard for half a kilometre-- and I didn't need my inhaler still. My heart has actually improved as well. Where I used to get a lot of discomfort because I have extra beats in my upper chamber and a very compact torso, I haven't had nearly as many bigger episodes I guess you could say for a really long time. Just a flutter here and there.

So, you know, it's weird. Sometimes I wonder if I'm just stressing myself out, and sometimes I wonder if I should be taking the Lyme thing seriously or it might kick me later. But not being able to see confirmation for myself is driving me nuts.
I also think this gluten free sugar free diary free diet for Lyme is also driving me nuts on top of my all ready restrictive diet for allergies, haha.

I have a theory—or it's likely I read it somewhere and just forgot then convinced myself I came up with the idea! I miss my old brain.

Anyway, the theory is that once infected some people are healthy enough to handle the lyme without too many overt or disruptive symptoms. And it is common for people to not even know they were bitten/infected (me) until some other agitator—severe stress levels, severe physiological stressors like a severe illness or surgery or trauma (car accident) start to overwhelm the immune system—or multiple situations hit all at once and then bam! the lyme infection takes over and your situation becomes much clearer.

I would bet that your body was just trying to fight off too many things, like mine, all the time… and as we get older, the toxin levels continue to increase, life's stressors continue to build, and our immune systems continue to weaken. And here we are.

OK, interesting, we have two more things in common. I had a minor level of asthma as a kid—got worse when I was in my 20s then better. AND, I have heart irregularities and used to get flutters a LOT—and this started in my 20s - a decade before I think I was bitten. Maybe I was bitten when I was a kid?

I totally understand the diet exhaustion—that's how I feel. I always had stomach issues but never ate when I was a child/in my teens/20s so I think the symptoms were rather subdued. I started eating more after a trip to europe and actually developed a taste for food. And a few years later, which I think I was bitten, the GI issues started to develop. This time last year it was my most sever issue. I was finally diagnosed with "bell's palsy of the GI", associated w/ Bartonella. Wanted to ask——what are your stomach issues???

Regarding testing, I totally get that too. In my humble, unsolicited opinion ;) I think it is VERY likely you have lyme and/or co-infections. And I bet most people here would recommend that regardless of what symptoms you do or don't think you have, you need to get to a LLMD or LLND ASAP. And go from there. Most all lyme testing is inaccurate, undependable, and even elusive for some. Confirmation from tests is ultimately a likely requirement for your insurance company but not necessary to get started with other forms of treatment. And a good LLMD will tell you that it is your symptoms that are most informative to her—in concert with test results but even independent of test results a clinical diagnosis is possible.

And like me, I would guess that your bodily systems are being affected in one way or another due to the infection(s), which complicates a treatment approach. You seem quite knowledgable about many of your issues so that well be helpful. As you know, it is pretty important to stay off birth control—too many toxins and will make it difficult to balance your hormones. Also, having knowledge about and following a healthy diet is enormously advantageous—so stick with that—it will help you so much. I really think that if I hadn't started a mostly organic diet over a decade ago, and stayed off birth control for the past 15 yrs, and started almost inhaling fish oil everyday that I'd be a lot sicker.

It's good that you are here… keep reading and posting.

-p

Pretty sure lyme can mess with our hormones so have you consulted llmd about impact of birth vontrol and interaction with lyme?

Ellip, you could help him out by taking him the new ILADS treatment guidelines and/or Burrascano's "Advanced Topics on Lyme Disease" paper where he discusses treatment options as well.

If you are interested, links for both can be found in the "New to Lyme?" thread.

Woo hoooooo!!!! Congratulations on feeling better!!!

I think we ought to celebrate every little victory!!!