So I'm having some new symptoms (since stopping the amoxicillin - which I have now come to expect). I wanted to see if you guys think they sound only like Lyme or if they sound particular to any coinfections.
What I tested positive for:
-CDC standard IgM and IgM western blot bands 41, 23 kda.
-Rocky Mountain spotted fever 1:256 (tested positive at that titer level 8 weeks apart, each time getting the same result)
I tested negative for all other coinfections that I was tested for but positive for the following IgG infections (IgM result was negative so I was told these are not active infections): toxoplasmosis, mono, roseola.
New symptoms that I'm wondering if they are due to Lyme or possibly coinfections:
-heaviness or sort of like a pressure feeling in my lungs and trachea (similar to the feeling you have after you've had an endotracheal tube pulled after having surgery, in case you're familiar)
-headache (not normal at all for me) with feeling of pressure on the right front section inside my brain
-and this was the weirdest thing ever: I was watching my son playing with his cousin Christmas evening and I was talking to them and I said his name and I suddenly thought 'is that his name? Yes that is his name, we named him that.' It wasn't that I forgot his name fully, but it was this odd feeling that his name was unfamiliar to me. What on earth??????? This is my little one, my baby, I'm a stay at home mom and my baby is my whole life and my whole world, I have never had a thought like that ever before. It was just bizarre. I can't fully put it into words but then it passed and I felt normal but during the confused thought I just felt lost. It was really scary for me.
-heavy feelings circulating through my arms, legs and whole body. The heavy feeling also makes me feel like those body parts are absolutely exhausted if that makes any sense while it's happening.
-cold feeling patch of skin on the arch of my right foot (but it just feels cold to me but if I touch it my foot is actually warm there). Before I stopped the amoxicillin I had a cold patch on the back of my left knee but that resolved while on the amoxicillin but I've also been feeling that one again sometimes too now.
-needing to take deep breaths to feel like I'm getting enough air (this happened when I took amoxicillin too, it would get worse for a few days every month and then get better. And I do have low ferritin too so I don't know if it's due to that, and so far I'm not anemic based on my CBC).
-numb/asleep-feeling/tingly-ness in my left thumb and index finger.
-soreness in the back of my neck and shoulders (don't know if it's even related to any pathogen).
So does it all sound like Lyme or more like coinfections? I won't list my whole list of symptoms, just those new ones since I've never had them before and it was scaring me last night.
Also, what do you think this means?:
-as I go forward without taking amoxicillin, every day I have parts of the day where I feel almost completely normal except for some little thing and during those times I think I'm fine and don't need further treatment. But then a horrible wave of symptoms hits and about
knocks me off my feet! Could it all completely disappear if I give it time? Or does it mean I killed a bunch of bacteria during almost five months of antibiotics but now they're able to come out of hiding and attack during some parts of the day? It's unpredictable when a wave of symptoms will hit. No pattern for me except that I can expect symptoms to strike at some point in the day and it can happen on and off. Can anyone give me a possible explanation for this? Or any insight about
if it might just gradually all stop without further treatment?
And lastly, I have recently heard of DNA connexions and am wondering if it's very accurate and worth doing? Or is igenex or stony brook more worth it? Or some other lab? If so can you give me the name of whatever other lab? Since I'm currently off the antibiotic I'm thinking now would be a good time to do testing for DNA connexions. I just wouldn't want to waste money on something that could easily give false positives or negatives. We don't have the money to spare
But I'm wondering if it'd be helpful/worthwhile (I already know I have Lyme but still wonder about
coinfections since I tested negative for all but RMSF and apparently you can get a false positive for RMSF if you have Lyme so who even knows if I have/had it?).
Thank you so very much for any thoughts and thank you so much for all of your calm support, advice and help so far! You are incredible people and I am forever grateful!