Wow, all throughout the past 2 months, I have intended to post news, things I'm learning through this journey, new treatment changes, etc. That didn't quite work out for a number of reasons.
and now I'm overwhelmed. where to begin? I'm determined, though, to post something before August!
May
Overall, May was a really good month for me. The most strength and energy I have had in... literally years. (!!!!) Such a blessing! We attribute this to the two months prior that I did IV tigecycline. That drug is BRUTAL, but we see the most progress with it.
In late May, I began a new treatment protocol. It is aimed at various parasites, including Babesia. And they are all ORAL antibiotics. I'm doing this protocol all summer until my appointment with Dr. J in August.
The first round wasn't too tough - I stayed pretty functional and didn't have severe side effects or herxing. The following drug holiday was more difficult - my immune system was working hard to fight the infections on its own, so I was very fatigued. But still functional.
June
June was a much more tumultuous month and I slipped downhill from where I was in May.
The second round of the new protocol was much more difficult. I struggled a great deal on my drug holiday with severe fatigue and quite a few neurological problems started flaring. I had some pretty good days mixed in there thankfully.
July
It has been a tough month. I'm really struggling. I've had a some "good" days that have been much enjoyed. But the "bad" days have been much worse and frequent than the "norm".
My autonomic nervous system has really taken a beating and the symptoms have been especially intense. Seizures, severe noise sensitivity resulting in more seizures, fainting multiple times a day, falling, dizziness, severe nerve pain all over body, blurred/double vision, confusion/poor memory, droopy right eye, severe headaches daily, slurred & stuttering speech, very poor concentration, etc.
my droopy right eye over the past 2 weeks. don't mind the fact that I look like a creepy alien (or maybe Voldemort eek!) in the second photo:
My autonomic nervous system has really taken a beating and the symptoms have been especially intense. Seizures, severe noise sensitivity resulting in more seizures, fainting multiple times a day, falling, dizziness, severe nerve pain all over body, blurred/double vision, confusion/poor memory, droopy right eye, severe headaches daily, slurred & stuttering speech, very poor concentration, etc.
my droopy right eye over the past 2 weeks. don't mind the fact that I look like a creepy alien (or maybe Voldemort eek!) in the second photo:
It has been is a big concern of ours about whether these oral antibiotics will be adequate enough to keep me stable (and ultimately progressing) so that I don't need any more IV treatment. Dr. J has me keeping my PICC this summer "just in case." We would really appreciate it if you would join us in prayer over this.
My symptoms got distressing enough that at one point I was actually wondering in my head whether we should go to the ER - I NEVER think that. My policy has been not to go to the ER unless I'm not breathing or septic or bleeding profusely. Basically, if I'm dying. Nurses really are bad patients, haha. Thankfully Spencer has a more balanced, healthy perspective on when it's time to go. We were able to calm down that scary episode without going to the ER thankfully. We called into the clinic and Dr. J called us back, but of course we missed his call! He was out of town for the next few days, so I had a good phone chat with his P.A.. She was great!
She said that some other patients on the same protocol have also reacted strongly with intense symptom flares, especially regarding the autonomic nervous system.
The die-off causes herxing as is to be expected. But, these new drugs are killing different kinds of bacteria, parasites, etc. So the die-off reactions can be different from what I've been through thus far. Herxing from Lyme die-off has become less intense over time for me - my immune system is starting to better deal with lyme and I'm detoxing better.
But, this die-off is new. Some of these icky critters, when killed, release OTHER bugs. NEW bugs. Bugs that my immune system has never encountered most likely. So even more toxins and herxing + an immune system that is freaking out. No wonder my autonomic nervous system is rather troubled.
Anyways, I was really encouraged by what she had to say. Yes, my body is a mess right now. But it's most likely due to intense herxing from new pathogens being killed. Over time it'll most likely settle down. Feeling less worried about backsliding.
Some of my medication doses were changed to help stabilize my nervous system and I had to up my seizure meds. A bunch of tests were ordered. I'm pretty sure that most of my blood ended up in the vials and culture bottles yesterday at the lab. :)
So we'll see. I just finished a round and am feeling a bit better today.
My symptoms got distressing enough that at one point I was actually wondering in my head whether we should go to the ER - I NEVER think that. My policy has been not to go to the ER unless I'm not breathing or septic or bleeding profusely. Basically, if I'm dying. Nurses really are bad patients, haha. Thankfully Spencer has a more balanced, healthy perspective on when it's time to go. We were able to calm down that scary episode without going to the ER thankfully. We called into the clinic and Dr. J called us back, but of course we missed his call! He was out of town for the next few days, so I had a good phone chat with his P.A.. She was great!
She said that some other patients on the same protocol have also reacted strongly with intense symptom flares, especially regarding the autonomic nervous system.
The die-off causes herxing as is to be expected. But, these new drugs are killing different kinds of bacteria, parasites, etc. So the die-off reactions can be different from what I've been through thus far. Herxing from Lyme die-off has become less intense over time for me - my immune system is starting to better deal with lyme and I'm detoxing better.
But, this die-off is new. Some of these icky critters, when killed, release OTHER bugs. NEW bugs. Bugs that my immune system has never encountered most likely. So even more toxins and herxing + an immune system that is freaking out. No wonder my autonomic nervous system is rather troubled.
Anyways, I was really encouraged by what she had to say. Yes, my body is a mess right now. But it's most likely due to intense herxing from new pathogens being killed. Over time it'll most likely settle down. Feeling less worried about backsliding.
Some of my medication doses were changed to help stabilize my nervous system and I had to up my seizure meds. A bunch of tests were ordered. I'm pretty sure that most of my blood ended up in the vials and culture bottles yesterday at the lab. :)
So we'll see. I just finished a round and am feeling a bit better today.
Meanwhile, Spencer is continuing to do a week of maintenance antibiotics every 4-5 weeks. He has been very worn out. Getting up at 5 each morning for work doesn't help! This guy needs a vacation.
I am so thankful for how HARD he works to provide for our little family, both at work and at home. He really is incredible, how tenderly and patiently he cares for me even when I am grumpy, needy, confused, difficult, etc. It's been stressful for him to see me falling apart, but he is steadfast and continues to encourage me and not let himself despair or grumble. I am BLESSED to be his bride.
Besides the fatigue, most of his symptoms, especially his headaches, are much better. We're curious about what Dr. J will say at his appointment in August. Will he be done with treatment?? What a happy day that would be! We kind of tend to think that he will need to continue with maintenance, but one can always hope.
A lot of this I've been typing for many days. I'm ready to take the plunge and actually POST something :)
I am so thankful for how HARD he works to provide for our little family, both at work and at home. He really is incredible, how tenderly and patiently he cares for me even when I am grumpy, needy, confused, difficult, etc. It's been stressful for him to see me falling apart, but he is steadfast and continues to encourage me and not let himself despair or grumble. I am BLESSED to be his bride.
Besides the fatigue, most of his symptoms, especially his headaches, are much better. We're curious about what Dr. J will say at his appointment in August. Will he be done with treatment?? What a happy day that would be! We kind of tend to think that he will need to continue with maintenance, but one can always hope.
A lot of this I've been typing for many days. I'm ready to take the plunge and actually POST something :)
2 comments:
I had a picc line also, but we could only afford a little over a month of it. I got it removed Wednesday. Now I'm on liquid herbal meds. My stomach can't handle all of the oral medication that I was on in the beginning months.
Stay strong you two! Praying that you have good days! Thanks for posting. :)
Thank you for taking the time and energy to keep us informed! Praying for your appointment this month!
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