- I had a rough summer due to a set back caused by my ceasing to take inter-muscular medication.
- Fall is a busy time of year because Scott cleans chimneys. What little energy I have has been used to help with classes. I only just recently have felt up to turning the computer on.
- Both girls have needed a lot of my time and energy.
- I have been focusing what I have left for time and energy into a blog that shares how two families have come together to support each other as they navigate the road Lyme has put us on.
So, I wrote a couple of blogs last summer and talked about having a down turn in progress. I quickly looked back and didn't notice that I ever explained why I had a down turn. It was due to the cost of the Bicillin injections. The already expensive medication steadily increased in cost until I found myself needing to pay $1000 a month for this medicine alone. I asked my doctor change me to solely oral medication. She gave me her concerns, but understood that I couldn't pay for this medication anymore.
I thought that worse case scenario would be that I stopped making progress. I could live with that because I was at least able to function a little. I felt that I needed to at least try going this more cost efficient route. At this point there were three of us in treatment and I didn't feel right taking such a high percentage of the finances.
Unfortunately, over the summer I quickly declined. At first I hoped it was due to some other med changes that had been made, and maybe some of it was, but by the first week in August I knew, for sure, that it was due to the oral medication not being enough. Not only was I not improving, I was quickly returning to being as sick as I was at the beginning of treatment...if not sicker.
WARNING: The video below is disturbing to watch. It is part of the worse seizure I have ever experienced. I am sharing it for one simple reason. TO TRY AND CATCH YOUR ATTENTION. Until this disease is recognized and given the same attention as other serious illnesses I will do all I can to impress upon you the importance of not only advocating for yourself, but for all of us suffering silently. This could be you! Also, I want to be clear that I don't feel like I had any other choice but to return to more aggressive treatment no matter the cost. It was due to the IDSA and CDC and their refusals to pay attention to current research that my insurance is not obligated to pay for any medicine to treat Chronic Lyme Disease. This should never have happened. I should never have felt forced to stop the treatment that was causing me to improve. FYI: I am not screaming due to pain, it was a part of the seizure
Needless to say, I immediately told my doctor I was ready to look at my options. I was just going to trust God to provide the means to pay for the needed medication. My life could be at risk if I didn't go back to aggressively treating this disease.
Because IV medication is more affordable, I started the process of getting a pic line placed. I did my best to trust God and not worry about the fact that I knew Jenna would be needing IV medication as well. Paying for both of us to be on IV meds would cost the same, if not more then, the Bicillin injections. During this time, my husband's best friend was also beginning to treat his Lyme disease more aggressively. He told us he wasn't doing IV, nor was he doing Bicilin, He was doing a common IV antibiotic as an intramuscular injection. His out of pocket cost was less then the IV meds would be. We checked our insurance plan and discovered they actually covered this shot! I contacted my lyme doctor to inquire if this could be an option for me. Thankfully, she told me it was. She explained that she didn't suggest that medicine anymore because it is even more painful then the Bicillin was and also I would need at least one shot a day. Most patients couldn't tolerate this for as long as it would take to get to remission. By now, though, my doctor had gotten to know me well enough to know I would stubbornly put up with any amount of pain if it meant I could get well. She agreed to let me attempt these shots. Here it is, after three months, and I am still getting them every day and slowly, but steadily, improving. I am nervous that at some point I may need to go to the full dose, which may mean two injections a day. I will just deal with that when and if the time comes. For now, I am so grateful that God showed me that He will direct my path and will meet our needs.
Now let's catch up on where the girls and hubby are at!
Chelsea:
Started high school in the fall, and then slowly took a down turn. She did manage to play volly-ball and made it to most games. We are thankful to her coach for being understanding about her frequent absences. We were very sad for Chelsea when she had to make the decision to drop the fall musical. The visual and performing arts are Chelsea's passion. Dropping out of this performance was a decision not taken lightly, but it turned out to be for the best. She would have struggled to keep up with the intense practice schedule. Chelsea's first quarter report card showed how hard she was working, all of her classes had grades of B's or better despite how often she missed school.
The past three weeks have been extremely difficult. Chelsea has only been to school a handful of times. We are grateful that the school administration allowed Chelsea to have a tutor who can come to the house and help her stay caught up in her school work. Her Lyme doctor is still trying to narrow down why Chelsea has been having such a hard time. We've ruled out Mono, but are still checking for other illnesses. We haven't ruled out Babesia as being the culprit, but Chelsea's Lyme doctor doesn't want to automatically assume that her symptoms are due to another tick born infection. For now, we have put treating Chelsea's Bartenella on hold, and are going to get some more blood drawn tomorrow so her doctor can continue to piece this puzzle together. I'm not going to lie, it's in the back of all of our minds that maybe the oral medication for Lyme just isn't enough. That would mean Chelsea would either need IV medication or Bicillin injections. The shots I am using are off the table for both girls. I would never put them through that daily pain and I also don't think their small frames could tolerate it for to long. These shots are killer on the hips.
Jenna:
Finally had her first appointment with a Lyme doctor. She had slowly been declining over the summer due to a number of reasons that would make this blog needlessly longer then necessary. One thing we knew by the time we arrived in our Nations Capital, Jenna was very sick with a neurological disease that we strongly suspected was Lyme/Bartenella/Babesia. Jenna was passing out regularly (her lyme doctor believes that she is actually having a small seizure when this happens), she was no longer able to walk far without her legs giving out, and her sensitivities to light, motion, and sound had reached an all time high.
Upon examination our Lyme Doctor found numerous neurological issues. I have struggled not to hold on to anger over the fact that I KNEW other doctors had seen these things and never expressed concern. In fact, although looking back I now know why they triple checked certain things, at the time the doctors never even told me what they had discovered. Anyway, there was no question as to the cause of Jenna's symptoms now and after waiting a month for all the blood work to come back we knew for sure that Jenna had Chronic Lyme Disease. It was official, Scott, Jenna, Chelsea and myself all tested CDC positive for Lyme. Jenna "beat us all" with NINE bands on her Western Blot! We were so thankful for this because that meant her insurance would cover the pic line being placed as well as pay for 28 days of IV meds. This diagnosis came just in time. The trip had worn Jenna out and she had developed a new symptom, losing the ability to speak and speaking with a stutter. I am posting a video with Jenna's permission, actually by her request, for the same reasons as stated above. Please scroll past if this would bother you to watch. Understand, my family and I are MAD and we are going to keep crying out as loud as we can until our community is as mad as we are! I do want to let you know that this symptom hasn't come back since we were able to come back home and Jenna has started treatment and been able to rest quietly. It would, most likely, quickly reappear if her treatment were to stop.
Scott: He has been doing steadily better since he changed from his first Lyme doctor to the Lyme Doctor Chelsea is seeing. He has struggled to spend the morning's cleaning chimneys and the evenings teaching Taekwondo, but I have helped at night and he has had help on his busy days getting the chimney's done. We've only had a few days of him coming home shaking like he use to. Most recently he starting having B12 injections and for the first time he is reporting that he is feeling like himself again!
And now, to share where Jenna and I are after we both had an appointment today!
I am slowly and steadily improving. It is slow going because I am really struggling with the medication that I pulse forcing me to not be able to increase the dosage of those meds to the level that is needed for optimal improvement. If I could stay in bed and not take care of anyone else but myself I would be able to push a bit harder on these meds, but after being unable to do anything for so long I need to be present to help the rest of my family as they are also in treatment. I have had an increase in fatigue and memory issues, but my doctor suspects it's simply due to the stress I am experiencing that comes with having two sick children. I will continue to rest all I can and not to push myself to hard. When I am frustrated I remind myself of all the small milestones I have made: teaching class from the standing position instead of from a chair, helping in Taekwondo at least once - if not twice - a week, going to church two weeks in a row, experiencing severe fatigue on days where I needed to function on behalf of my kids and not having a seizure!
I am very excited to share how Jenna is doing! She had a rough start to her treatment. Not only did she have a week of severe nausea and vomiting, but she developed thrush and a throat full of ulcers. Her doctor switched some of her meds and we were finally able to get the vomiting under control. Here's the good news, the lucky duck had a couple days of severely herxing..and then bounced back becoming more herself then we've seen in a long time. Don't get me wrong, her first huge bacterial die off was intense. It was like having a Alzheimer's patient in our house. Luckily, for her, she has no memory of her adventures and we are now able to joke about it. She also is sleeping like a rock star. I am joking that my 18 year old finally learned how to sleep through the night!
Telling your Lyme doctor that you are already feeling better means one thing, that it's time to double your dosage and add more meds in! We are hanging on tight as we prepare for another rough ride while dealing with Jenna's neurological symptoms, but the good news is that if she keeps going like this she may find herself in remission in less then a year! I was honestly concerned that the fact that Jenna literately cooked in this crud while I was pregnant with her would make beating this disease difficult. Apparently, being young, Jenna has a stronger immune system and as long as her body continues to be able to process all of this out as easily as it is so far she may finally find something actually goes easy for her for once in her life.
Now the bad news, her 28 days of insurance coverage is almost at an end. We will be forced to have to pay out of pocket to continue her IV treatment, and we are doubling the dose! YIKES! As always, I am trusting God to figure this out for us. It does break my heart to see my sick child trying to find ways to make money because she knows the money isn't there. Her new husband is looking for seasonal work, he is leaving for boot camp in February at which point they will have an income although they will also have all the expenses associated with moving out on their own. We are definitely hanging on to the hope that if we can get through this winter, Jenna may actually be weaning off treatment by the time they move.
Wow, if you are still reading this then you must really care about our family. Thank you! Please keep us in your continued prayers!
Now the bad news, her 28 days of insurance coverage is almost at an end. We will be forced to have to pay out of pocket to continue her IV treatment, and we are doubling the dose! YIKES! As always, I am trusting God to figure this out for us. It does break my heart to see my sick child trying to find ways to make money because she knows the money isn't there. Her new husband is looking for seasonal work, he is leaving for boot camp in February at which point they will have an income although they will also have all the expenses associated with moving out on their own. We are definitely hanging on to the hope that if we can get through this winter, Jenna may actually be weaning off treatment by the time they move.
Wow, if you are still reading this then you must really care about our family. Thank you! Please keep us in your continued prayers!
