Hey Karina, Im actually in VA....lucky you--moving to Cali! What part of VA were you in if you dont mind me asking? Im near Fredricksburg VA (or about
an hour from Richmond).
To be honest, you sound like your on a great protocol for healing. The double intracellular abx along with the Mepron is a great combo. Its just important to stick with it! Thats where I messed up, I would go on and off of my protocols and messed around and went in to chronic form of the illness. When you mentioned about
all the research you have been doing sounding scary...well to be honest, while knowledge is power, at the same time it can be so overwhelming reading all the stuff about
lyme. Omgosh let me tell ya, I have been there and would go on the internet and read some stuff and it would totally mess with my head by reading the negative stuff and then would even have me questioning my protocol. So its very important to not let the lyme stuff from the internet 'consume' you and especially not let it question your protocol because of what sounds like it may be working for someone else. Stick with your protocol and give it a fair chance and its really good to start a journal if you havent already. I write down what time i take my meds and the time, whether its been a 'good', 'fair' or 'bad' day, and if its been a bad day i normally record my symptoms too. This way you can reflect back and see if your starting to slowly have more good days and you'll know if your protocol has seemed to be working or if you may need to change things up if you seem to be hitting a plateau. It can be a couple months before you start to see improvement.
To be honest, from my personal experience and from reading the "stages" of lyme on certain reputable sites over the years...I think you are probably "late-stage" and not just yet in the "chronic form". I say that because I remember when I was in that stage and it consisted of alot of anxiety and heart palps(Also, judging by your time frame you mentioned)...but Omgosh-your so right...the heart palps and anxiety are super scary to deal with! I would also prefer the flu-like stuff body aches. I hate any, mental, heart or breathing symptoms!! But stick with your protocol like your life depends on it and I think you will start to see improvement soon. I feel so bad for the people who have little ones to take care of. I am 35 and I dont have any kids. Now I am scared to try even when I do get well because I am terrified of passing this on to my baby(I guess I will cross that bridge when i get to it). I wouldnt even wish this on my worst enemy much less my child though. I know its hard when your body feels so crazy sometimes, but try to be thankful for the what your DO have. Try your best to "fake it, until you make it'. Even if your feeling bad, you can still push and be there for your boys in the best ways you can. If you cant, also dont beat yourself up for it. Mommy IS doing her best to get better because she does want to be there for her babies. You didnt ask for this, but at least you CAN get better. Its just a hell of a ride to get there and will take all your strength and then some but it WILL be worth it. I only have a fur baby(dog). I feel bad when I cant take her for walks or play with her. The dog is like my angel though because when no one else has been here, she has been in this house by my side(her and the man above that is).(Ughh tears flowing a little bit thinking about
all of this for you, myself and all the other lyme sufferers). *Sigh*
Regarding the anxiety, that is a whole ball game of its own. I have been through the RINGER with just that in itself esp in the beginning. Deep breathing techniques has helped me alot with that. Also, taking a something like a klonopin or valium can really come in handy too but just only as needed so a dependency(addiction) on them can be avoided.
Now what is confusing to me is, when I feel awful like on Monday that I thought I would suffocate from air hunger that brought on anxiety like crazy, I took mepron for the first time the Sunday night before-so was that a herx?
To answer this Q, IMO, I dont think it was a herx from the Mepron itself. It takes some time for Mepron to start working. I honestly think it was from the Super Moon messing with you that occured Sunday night. Im no expert, but I think it was from the bacteria being active during the moon and your other meds starting killing stuff! Which yes, thats is how all this is supposed to go. You will feel worse before you get better as Im sure you have heard before. After your herxing subsides, usually you will SLOWLY over time start to feel better and better. Again, Im so glad your doing everything gradual though. I have had some scary mean herxes in the past from taking too much to fast. Regarding your air hunger, does it feel like your chest is tight, or something is sitting on your chest and in turn affecting your breathing? I honestly have had SO MANY INSANE symptoms. I have had that symptom with a real bad herx some years ago. I still get it from time to time with herxing but not like I did years ago(it lasted for 2 mnths straight back then!) In regards to remedies, I had two. It may or may not work for you because we all different, but its worth a shot to share them. So one being taking a like a half of a benzodiazapane(valium, klonopin, xanax). The 2nd was to take a pinch of "himalayen sea salt" and put in like 4oz of water, stir and drink. I dont know how or why either ones of these worked but its what helped me when I had trouble breathing. My llmd recommended the 1st one and the 2nd one I had read about
online and it had a reason that it worked but i cannot recall why.
Im assuming your taking the Mepron with fatty foods as thats how it is better absorbed. I liked taking mine with olive oil. For some reason I do remember alot of numbness with Mepron. I still dont know if more from the drug itself or because it was messing with the bacteria.
Will my body get used to it or will it kill enough bugs that it will be in maintaining mode and kill off a little everyday and therefore I won't have a dramatic die off experience?
Basically, when the bugs are in their life cycle, thats when they will be susceptible to killing and the abx you are taking and hence the herx happens. If your body is in really good detoxed shape you may not even notice the symptoms of the herx....but if your body is not prepared for the die-off from the herx..thats where the herx symptoms happen. The quicker you can get the dead bugs out of your body, the quicker the herx will end.
The stupid "Super Moon" even caused me to herx this last week and i have been doing well for the most part of some months now. I had also took my highest dose to date of the herb Arteminsin the night of the moon so that def didnt help things either Im sure! The last full moons I did not even flare which I was happy about
but this one did get to me. (Btw, if youre not familiar, look up "full moon lyme"...its sounds like hocus pocus but it has something to do with parasites/bacteria being in sync with the moon cycles of nature and since we have the organisms in us.. it affects us too! Cray Cray, I know smh). Also, us women tend to herx around ovulation and our menstrual cycle. Being females our immune systems lower around those times so the bugs love to come out and play(grow) when we are at our vulnerable states.
This is why detoxing is so important. When stuff is dying off, it turns in to toxic dead organisms in your body that cause inflammation and is what makes us sick and feel like we've been hit by that truck!
This site is the best for listing various detox remedies:www.tiredoflyme.com/detox-methods.html
Get the toxins out asap is key to getting past the herxing and to start to feel better and better as time goes by and your bacteria load gets lower and lower.
Being that you stated " I will say I do feel better, many of my neuro symptoms have subsided completely and others have been toned down and not so scary anymore."
....that right there is a blessing in itself! Im still not 100 myself, but its been better and for that..I am thankful. We just gotta keep on trucking the best we can. I still get so frustrated that there are so many people suffering with these stupid infections but like you said it is so vague and there are many that have no idea what we have to go through! Ughhh...I wont even go there with that at the moment :-//
Regarding the inhaler, I am surprised I have never heard of that. I would do extensive research before putting out money like that as sadly there are people out there who know how desperate we call feel with lyme so they want to try to profit off of it! Actually, if I were you, maybe even start a thread in this forum regarding the inhaler treatment to see if anyone has experience of or has benefited from it.
Unfortunately to date, there is no "silver bullet" for lyme & co-infections. I hope someday there will be as they are doing more and more research lately.
Best to you in your healing journey!
"And However Difficult Life May Seem,
There Is Always Something You Can Do And Succeed At.
It Matters That You Don't Just Give Up." S.H.