It's been a while since I've posted. I'm not sure why, life has been busy since being home, getting used to my new life of having to not push myself too hard each day, and dealing with the repercussions of when I push myself too hard (which happens all too often). But still try to keep up on house chores when I am able to. My son started Preschool last week, so now I am a school mom (feels so weird! I don't feel old enough!), taking and picking him up two days a week.
As for the Lyme front, by the beginning of August I was showing signs that yeast was back in my gut full force, even though I'm on two anti-fungals (Nystatin and Diflucan). So I made an appt with my doc and he decided my body has become somewhat immune to these meds and we went to bigger guns and started a round of Ampotericin-B (known to be used only as IV for patients who are septic and can be very toxic to organs such as liver and kidneys, but this is compounded into oral form so it's only absorbed in the gut). I didn't notice any die off reactions in August that he had warned me about. Meanwhile I was having more daily headaches, increased migraines, increased daily sweating (I would have to change all my clothes after walking through walmart for groceries, or the library... and forget putting on makeup! there is no point! I would sweat it all off within the hour). I also noticed that when I stepped out of bed in the mornings and through out the day, the bottoms of my feet would hurt (pin prick pain and heel pain)- symptom of Bartonella (co-infection of Lyme that I'm being treated for), along with my anxiety and panic attacks starting to come back (I haven't had problems with my anxiety and haven't had to take anxiety meds in about 4-5 months. So when I had my recent appointment with my doc, he started listening to my list of symptoms, and stopped me. He then said he wanted to ask me a few questions first. He began to ask me questions as if he were reading my list that I had written! He would say "have you had worsening of this...." "well yes, actually I have"... so, come to find out my Bartonella treatment doesn't seem to be working any more. It's coming back! oh Joy! I also have figured out sugar causes me headaches and nerve pain up and down my spine and in my joints. Chocolate also causes me pain. IT TOTALLY SUCKS! I LOVE SUGAR and I LOVE CHOCOLATE! But I have decided I am tired of week long migraines and daily headaches and nerve pain that can only be treated with morphine, so I have cleaned out the cupboard with what is tempting to me, and I am now Gluten free and sugar free (well mostly sugar free... low sugar or sugar substitute- though I have to be careful of certain substitutes because some can add to my headaches). I've read of other lyme patients who have to stay gluten free, sugar free, chocolate free, caffeine free, etc. throughout life, because it can cause symptoms to come back, and relapses to occur. So I fully expect that this may become a complete lifestyle change for me. But if it makes me healthier and helps me feel better, and helps me loose the weight I've gained, then I will try my very best to stick to it. I have fallen off the wagon once, it's hard to stick to this type of diet. It is strict, it takes alot of energy because you have to make alot of things by scratch, and most store bought items that are healthy and gluten free are EXPENSIVE and hard to find in the area I live. Needless to say, our food bill this month was a gouger! ouch! It's going to take some time to build my gluten free reserve of food in our pantry and get used to no sugar. But it also keeps me from wanting to "over eat" or snack when I'm not really hungry because I just have to think about how expensive it is, and I decide, I'm not that hungry, I think I'll go chew some gum instead.
So in summary, I am at a standstill in treatment. My gut is full of yeast, my bartonella is coming back, my lyme treatment has hit a wall. I am up most days and able to care for my son (though I have help from my angel sister a few days a week so I can rest), I do have to take 1-2 naps a day, and I have to really decide what I want to spend my energy on each day... for example do I want to take a shower and do the dishes? or do I want to do laundry and sweep the floors? I can't do it all. And other days I can't do any of it.
So, my doc and I decided to go for the big guns... IV antibiotics. In a few days I will start IV antibiotics in my PICC line. I am scared to death! I'm scared that I will have severe reactions like I did months ago, severe Herxheimer (die off) reactions, I know it means it's killing the bacteria, but it is beyond miserable and I don't want to go through that Hell again.
I also found out a few months ago from a blood test that I have a gene mutation that means my body under-produces Glutathione (the IV med I give myself every 2-3 days). Since my body doesn't produce enough of it on its own naturally, that is most likely the reason why I still need so much of it this far into treatment through IV. It also means I will need to find supplementation for the rest of my life after my picc line is removed. I've also learned that it's probably also the reason why I've also always had problems with endurance when it comes to sports and running, getting sick often and taking longer to recover from illness, etc. It's been very interesting to learn about. It has made me wonder if my son also has the mutation, he gets tired faster than other little kids his age when he's out playing, so I do worry. But with this knowledge, I hope I can help him to not have the same health problems I've had.
As always, this continues to be an eye opening and huge learning experience for our little family.
