Chronic Illness & Health Update

I haven’t checked in about my health in ages and I think it’s finally time that I do this.

So….where am I with my treatment, symptoms, prognosis, etc.?

Okay, so I am five months post-nebulizer treatment and….drumroll…..have been consistently feeling worse. So my doctor who administered that treatment last spring told me about 90% of those she has used it with respond well to the treatment, maybe not right away, but start to experience gradual improvements in the coming months. But then there is a remaining percentage of patients who don’t see any improvements.

So, What Next?

This past summer I wanted to wait things out a little. We thought my body just needed a break from treatment in general because I was feeling so weak and symptomatic. My doctor at the time suspected I could have Mast Cell Activation Syndrome and that was the reason why I was feeling so reactive and sensitive to the treatment. We tried a few combinations of pharmaceuticals that are supposed to help calm down the body if that is the case. It didn’t work and I continued to feel increasing pain that was very difficult to manage as well as increasingly extreme fatigue and weakness. By mid-summer I could hardly get out of bed most days and stopped driving myself anywhere. The pain became so debilitating that I nearly went to the ER a few times. I required increased pain medication and even then all I could do was slightly decrease it. My then doctor was stymied and not sure what the deal was. Meanwhile I was recommended to see a local doctor who apparently is excellent. I met up with someone who went from extremely sick to the point of hardly being able to put sentences together to back to life after seeing this woman. So of course I was game to meet this doc ASAP.

So we made an appointment and got in by late summer. She then wanted me to get a lot of expensive testing done to evaluate where I was before deciding what to do. But because I was so symptomatic and in so much pain she thew at me a bunch of expensive supplements that were supposed to help calm down my immune system, which we discovered was functioning at a level of someone who should be over 100 years old!

After a few months of trying various supplements to see if my body would calm down at all (to no avail), this doctor ALSO suspected that I could have Mast Cell Activation Syndrome (MCAS). I told her my last doctor thought that but that I didn’t respond to any of the medicines that usually help. But this doctor thinks that there are other combinations I could try. Of course there is no clear testing for this syndrome and everyone has different symptoms and needs different medication combinations (just like Lyme) but that it could be the reason why, after four and a half years of consistent treatments, my body feels weaker and more sensitive and reactive and symptomatic. She thinks that if this is going on, I will continue to feel worse no matter what other treatments are thrown at me.

Meanwhile I have also done testing on my adrenal and hormone function as well as for mycotoxins in my body that could ALSO be impairing my improvements. My adrenals and hormone functions could be better but are not completely awful, but my body IS riddled with mycotoxins which indicate damage done by mold exposure in my home. These toxins cause symptoms that are nearly identical to Lyme (awesome). This is not surprising since last summer we discovered that as an issue. My parents did work hard last year to clean and deal with a roof leak and purify the air as best as they could but my doctor told me that once mold is absorbed into the tissues, it will stay there until specifically treated and removed. Of course this process of removing mold toxins from the body through binders can take a long time and will also cause herxheimer reactions (where symptoms are increased because of toxin loads dying off and needing to be eliminated). Fantastic.

As of Right Now…

So this is where I’m at—taking binders to hopefully remove mold that has been absorbed into my body, continuing to address and inspect for hidden presence of mold in my living space, and continuing to try treatment combinations that could hopefully calm down my body’s reactivity if MCAS is indeed a contributing factor. Oh, and continuing to pound supplements to see if they help my immune system to function and detox properly.

What about treating Lyme disease? Well that is on hold…for now. It’s been five months since I’ve done any active treatment for Lyme bacteria, but my doctor is concerned that if I am already so reactive and symptomatic now, that adding aggressive Lyme treatments on top could be very dangerous for me. I completely share her concerns because I can’t imagine feeling more herxheimer reactions on top of my daily load of symptoms.

So we shall see how this current path goes. I am open to whatever this current doctor suggests once we see if my symptoms decrease at all—but am honestly dreading whatever protocol she recommends. She tells me it will get worse before it ever gets better—-but after four and a half years of “worse,” I kind of just want to skip to the “better” part now…sigh…

But I understand that Lyme disease is a brutal, vigilant, long battle and that it could still be several years of expensive, exhausting, painful fighting. But I’m still in the ring and, with the help of consistent prayers and support, will keep on fighting (sometimes crawling..but still)!

In Conclusion

I guess I share all of this to update anyone who has been following my journey and is curious to know where I’m at (treatment-wise) , and to simply reiterate how much need there is for increased awareness and breakthrough in the Lyme disease community! All of these treatments, appointments and testing is completely uncovered by insurance. For those of us who are unable to work because of Lyme disease, we are at the mercy of others for provision. I am so thankful for my parents and others who have generously contributed so I can continue fighting for wellness. But I realize there are many out there who simply cannot afford this kind of treatment and remain ill indefinitely. I wish there was a simple takeaway or something to do about that—but for now I think raising awareness is key.

I apologize that this post is such a downer and hope that next time I check in about my health I will have some good news. I am grateful, despite all of this, that there are people who continue to steadfastly support me throughout this long journey. I am so fortunate that I am able to keep treating at all and at least have the hope that I could get better at some point!