Lyme disease: Episode
2 - Good News, Not as Good News and Selfie Sticks
[Opening Crawl]
A handful of months ago through May 2015, in Washington DC…
LYME DISEASE
Episode 2
Good News, Not as Good News and Selfie Sticks
It is a murky environment in Julie's sinuses. While her main focus has been building up good bacteria in her gut to combat the damage caused from extended uses of antibiotics, it appears that some fungus planned a sneak attack and have taken up residency in her sinus cavity. Eluding the increased dosages of thyroid medication, Julie's thyroid function is still extremely sluggish and not improving. In addition, she has also been diagnosed with Common variable immunodeficiency (CVID) due to low levels of some of her immunoglobulin (Ig) classes.
The evil tickborne bacteria that have been laying low for the past 5 months have come out of hiding causing some of her neurological symptoms to crop back up. Immunoglublin IV therapy has been dispatched in the hopes to boost Julie's immune system so she doesn't have to go back on antibiotics...
[Camera tilts down through space and focuses on a desk in an
office in Washington, DC]
Fall 2014Julie: Oh one more thing I forgot to mention before I hang up. For the past month or so I have been getting sinus headaches and it is getting increasingly harder for me to do yoga poses that require me to bend over or stand on my head. My nose isn't stuffy though and nothing is draining.
Doctor: Are you sure this has only been happening for the past month?
Julie: No. But in the past month it has gotten more annoying and worse. And for the past week and a half I have been waking up with purplish/bluish rings beneath my eyes.
Doctor: *Sigh* I wish you had told me this sooner. I can send you for an MRI of your sinuses or you can believe me when I tell you that you have a fungal infection in your sinuses that is severely inflamed at this point.
Julie: I believe you. I also do not want to get an MRI.
Doctor: *soft chuckle* I am calling in a prescription to a compounding pharmacy for you. You will receive a package from them with a powered atomizer, three antifungals and a chelating agent. The atomizer will enable you to administer the antifungals and chelating agent twice daily into your nostrils. There will be detailed instructions for you to read. There is a specific order in which you must use the antifungals and chelating agent. Between each one you need to clean the chamber out in the atomizer with white vinegar and distilled water. Please call if you have any questions. And one more thing, one of the antifungals is going to cause a burning sensation in your nose when you use it.
This was a nightmare. I have finally recovered enough from the horrors of having to shoot anti-fungals into my nose for 12 weeks to share it with you. Feast your eyes on my atomizer. On the left, it is charging on its base. On the right, you can see the chamber which briefly housed the antifungals and chelating agent in specific order before I would put the top back on, stick the blue tip up one nostril while I held the other one shut, press the blue button and inhale. After each time I inhaled I had to switch nostrils. Each time the chamber emptied I had to clean it out with distilled water and vinegar and then keep moving through the sequence which took about ten minutes. The best part was the searing pain that would rip through my nose if I did a half-assed job cleaning out the vinegar from the chamber before reloading it. There is nothing like inhaling residual vinegar up your nose. It made the one antifungal which caused a burning sensation while using it look like child's play. I already know what your next question is going to be, I will answer it so you don't have to whisper. Yes, this contraption did sound like a vibrator when turned on, but it certainly did not bring pleasure to my nose.
What is a chelating agent? The one that was prescribed to me contained EDTA, which is a chemical that binds and holds on to minerals and metals (chelates). When they are bound to EDTA, the chelates don't have any effects on the body and they are removed. How does this relate to a fungal infection in your nose? When I switched doctors he found high levels of mercury in my system. From what I understand, our blood dumps toxic substances into our tissues to keep them from accumulating in our organs. Our sinuses are lined with tissues. The chelation agent helped dump the toxic metal load in my sinuses quicker once the fungal infection was detected.
April 2015
Doctor: I'm looking at your blood work results here and your thyroid is fine. You are still extremely hypothyroid even though we have doubled your medication over the past few months because your pituitary gland is adjusting your thyroid down. Unfortunately the reason it is doing this is because of the amount of immune stress that it is detecting.
Julie: Oh. Interesting. I guess it is safe to say that it will be tough to put a time frame on when my pituitary gland will allow my thyroid to start functioning again.
Doctor: You are correct. But it doesn't seem to be slowing you down. Based on your blood work you are biochemically hypothyroid. I expected you to tell me that you've been dragging yourself around feeling fatigued and depressed, but from what you have told me, that is the opposite of what you are doing. It is a testament to how spunky you are that you are not letting any of this keep you down.
Julie: The show must go on. How else will I afford my medical bills?
Doctor: *soft chuckle*
Truth me be told, I occasionally get hit with waves of exhaustion but overall the major issue I am having in relation to my secondary hypothyroidism is body temperature control. I guess one other issue, if you want to call it that, is I don't understand how this is going to correct itself. Perhaps I will remember to ask my doctor the next time I speak with him.
September 2014 - Present
In the link I referenced above when discussing mercury, you will also find that I mentioned in that post that my doctor was concerned about my low antibody count and taking me off of the antibiotics. Around the time I switched doctors he gave me an overwhelming amount of information and I must admit I didn't fully understand what a CVID diagnosis meant until this past February when some of my neurological symptoms began to reappear. One of the issues I was having early on in my Lyme experience was foot cramps. I didn't associate the foot cramps with Lyme disease, but as my treatment began and symptoms started clearing up, the foot cramps went away. This past December, they came back. They were the kind that didn't subside after pressure was applied and when they did finally go away the spot would be sore for days after. A few weeks after the foot cramps reappeared, I started losing feeling in my hands and my feet intermittently. And then the brain fog rolled in.
February marked 5 months since I stopped taking 8 out of the 9 antibiotics I was taking when I switched doctors. It was at this point that I started to understand why the low immunoglobulin (Ig) classes were a problem. While all of my Ig classes are not impaired, my ability to effectively fight off the tickborne bacteria is. Because we are still working on healing my gut/intestines/etc from the damage done by the antibiotics, my doctor chose to address the resurgence of my symptoms in a different manner.
Julie: Hi, this is Julie returning your call.
Nurse: Thanks for calling me back Julie. I am the nurse who will be coming to your home to administer the Immunoglobulin IV (IGIV). Have you received all of your supplies?
Julie: Yes.
Nurse: Have you read all of the documentation? Do you have any questions.
Julie: Yes, I have read all of the documentation. I am curious to know how many of the people you have treated have had a severe enough allergic reaction that you have to use the EpiPen that came with all of the supplies.
Nurse: Don't you worry about that. Just take the Benadryl and the Tylenol a half an hour before we are scheduled to start and you'll be fine. While some people get rashes, I have never had to use the EpiPen on anyone. You will get a severe headache, so don't forget that Tylenol.
Julie: Oh great! See you Friday.
Immunoglobulin (IgG) treatment is used to temporarily replace some of the antibodies (immunoglobulins) that are missing or not working properly in people with immunodeficiency. The goal of IgG treatment is to use IgG obtained from normal donor plasma to keep enough antibodies in the blood of patients to fight off bacteria and viruses. My insurance company approved 6 infusions. They take between 4-5 hours per infusion, and the nurse administers them once a month at my home. She takes my blood pressure every half an hour for the first two hours, and then every hour until we are done. Two days before the scheduled infusion, the supplies arrive at my doorstep. The first infusion caused a severe headache that lasted for two and a half days, along with flu like symptoms. I was told this would happen, so it wasn't a surprise. It was very intense, and it knocked me out for a weekend. I have completed four infusions and while I do get headaches during the infusion they normally subside the next day. I still get achy for a couple of days after but not nearly as dramatic as the first time around.
The beauty of the at-home infusion is that once the Benadryl kicks in and I can't keep my eyes open, I can just climb into my bed with the IV bag (no pole for me to cart around) and go to sleep. The infusions are usually uneventful. No rashes, no allergic reactions. But there was a minor incident in March during my second infusion. I was experiencing a bad bout of vertigo and while trying to go to the bathroom I managed to lose my footing and while I was saved from falling on the floor by the toilet I did dislodge the tube from the port in my arm. OUCH. The nurse tried to reconnect the tube but she couldn't. She had to stop the IV drip and remove the IV administration set (for lack of a better term) and insert another one. She tried to do it in my same vein, but it didn't want anything to do with being poked and prodded again. As she was moving the needle around in my arm I felt all of the color drain out of my face and suddenly the nurse said "Oh, don't pass out on me baby girl". As she got the drip up and running in my other arm, I sweated through all of my clothing and got a little dizzy. I drank some water, changed my clothes and then fell asleep for the remainder of the session. Fun times!
Ready to hear some good news? Here it goes:
I am spunky. It doesn't get much better than that, does it?
Actually it does. Despite everything going on, I am feeling great. This past March I started doing Biofeedback (more on that next time) and I had to fill out an assessment before my first appointment. One of the questions asked me to rate my overall health on a scale from 1-10. I was close to circling 7 until I took a moment to do an inventory on my health issues which included: Bartonellosis, Iron Deficiency, Babesiois, Disseminated Candidiasis, Irritable Colon, Lyme disease, Unspecified Chronic Thyroiditis and CVID. I ended up circling 5, which I admit is perhaps a bit optimistic and based more on how I was feeling in the moment than how my overall health is. It is now end of May and while my iron levels are no longer an issue, everything else on that list still is, and I still feel great!
I am happy to say that after the 12 week treatment for my sinus infection, so far, there is no sign of it creeping back. About two weeks after the second IGIV session I realized the foot cramps, the tingling in my hands and feet and my brain fog were nowhere to be found.
I have been able to travel twice this year without getting vertigo after flying. The vertigo I mentioned earlier in this blog post was exhaustion induced, not flying induced. (More on that at a later date). This past February I went to visit my sister in Florida. We did a lot of walking on beaches and through swamps. While a diet low in sugar is important for keeping fungal infections at bay, I ate key lime pie every day since I was on vacation. My extreme-desserting caused an incredible amount of intestinal distress for a week or two after I returned home, but I had no regrets and no other issues to report since my sugar binge ended immediately once I left Florida.
This past weekend I was in Phoenix visiting a friend of mine and we went on a 6 mile hike on one of the San Tan Mountain trails and I even jogged a bit while trying to keep up with her dog who set the pace. My hips and knees were a bit sore but overall, I felt pretty good. I also jumped in the pool and swam a few laps for the first time in 3 years or so. It was awesome. I also insisted on eating Mexican food on two different occasions while I was there. Yes, you guessed it... intestinal distress. But it was so good!
Over the past two months I have returned to the gym and have begun light cardio workouts and strength training. Both the working out and trying to figure out what "light exercise is" has been tough. Light exercise was never really part of my repertoire and I am out of shape. As I continue to improve and focus on rebuilding my strength and not injuring myself in my quest to get back into racing, there is one major thing weighing on my mind (well there are a few, but this one I am about to highlight really ties into this post). What is going to happen after the cumulative effects of the infusions wear off after my last one in July? Are my Ig classes going to drop without the infusions? Am I eventually going to have to start taking antibiotics again? Are the neurological symptoms going to come back? Or will I continue to improve because all I needed was an Ig boost to help with my CVID? It all remains to be seen. One thing is for sure, I am going to ride this wave of IGIV awesomeness for as long as I can.
*** Even though these infusions have been approved by my insurance there is still a steep out of pocket cost. I won't be able to keep these up without additional approvals***
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Lyme Disease: Episode 1
