I'm still here...

It's been a long time since I last posted. So much has happened. So much has changed. I'm still here; I'm still me. And I'm still sick. Everyday is a struggle. I am disabled and have been unable to work for the last 5 1/2 years. The best description of my illness/condition is Severe Dysautonomia as a result of both Late-Stage and acute Lyme Disease infections. The neurological "damage" or aftermath of the infection. To the best of my knowledge, the acute infection was treated with a rotation of IV and oral antibiotics (and vitamin infusions, supplements, detox therapies and many other supportive therapies) over the course of approximately 1 1/2 years. That was several years ago and you can find posts on the subject on this blog. I don't use the word "cured" when I talk about Lyme Disease because I am not convinced that is possible. I know the acute infection has been treated effectively. But I leave myself open to the idea that the dormant form can persist and reappear years later, as it did with me once already. In my case, my doctors and I estimated that the initial infection was lying dormant for 10-15 years before I was diagnosed. And when I was diagnosed, it was with both acute (IgM) and chronic (or Late-Stage) (IgG) forms of Lyme Disease (along with Erhlichia, Mycoplasma Pneumonia and Epstein-Barr infections). But that was several years ago. I do think it's possible that the infection is still present and dormant but I don't have compelling evidence either way on that subject.

Now, I identify most with the Dysautonomia diagnosis. I still struggle with the same major symptoms as I did years ago:
-Severe musculoskeletal pain (Severe Fibromyalgia), SI and hip joint pain being the most severe along with Sciatica
-Heat intolerance
- Severe, chronic Fatigue
-Weakness
-POTS (low blood pressure and tachycardia)
-Brain fog (problems with cognition and memory)
-Anxiety, panic attacks and OCD
-Sweating
-Vitamin D deficiency
-Fevers
-Nausea, no appetite
-Hypoglycemia (low blood sugar)
-Hormonal imbalances (PCOS)
-Headaches

And these new or worsening symptoms:

-Edema
-Neurogenic bladder
-Increased nausea, upset stomach and lack of appetite
-Random neurological sensations (numbness, tingling, stinging, etc.)
-Sleep Apnea
-Sensory overload (now I'm so hypersensitive to sound that it startles me 10-20 times a day, causing me to gasp and contract muscles all over my body, causing sensations of hot, cold and numbness all over)
-OCD (had gotten much worse)

And many, many other acronyms and symptoms...

But some symptoms have improved!

-Tachycardia-for the last 6 months, I've consistently gotten normal heart rate readings of 70-80 BPMs. Even 68 BPMs a few times! That's the lowest, healthiest I've ever seen! And while I do have bouts of tachycardia, my heart rate is 75-85 more often than not these days. I find special meaning in this improvement because tachycardia was the first measurable symptom that something was wrong with me, the first thing doctors could see, all those years ago. So a part of me, a very cautious part, likes to think it could be the first of many improvements. Note: beta-blocker dose hasn't changed. Nor have triggers (like caffeine or anxiety).
-Neck pain (used to be constant and severe during acute Lyme infection)
-Sore soles of feet in the mornings
-Fewer panic attacks
-Less nerve pain in arms and legs (without Lyrica)
-Hypoglycemia is much more manageable, crashes infrequently
-Less pain medicine (long-acting dose has stayed the same, needed less instant release pain meds for the last year!

And a few others that I can't think of at the moment.

I have made a ton of lifestyle adjustments. And I've been in therapy for OCD for over a year now, something I needed for a long time. I'm still on a lot of medications and take a lot of vitamins and supplements. But I have fewer doctors (Dr. Reifsnyder retired and closed his practice) and I see them less often. After so many years of tests and specialists, I got really burnt out. I was exhausted and not making progress. And some of the specialists I continued to see weren't prescribing or managing anything anymore (ex. endochrinologist and nephrologist). So, along with the support of my doctors, I stopped seeing some of those specialists and focused on home care and restorative rest. And restorative rest continues to be the most effective way to manage my illness. It's also still one of the hardest things to achieve.

I'm writing now, after so many years, because I need to reach out. I need to tell my story to get it out of my system, as a form of therapy. But I also need to connect with other people struggling with invisible illnesses. Cutting back to get the rest I need has further isolated me. And while I am an introvert in the truest sense of the word and do well with a lot of alone time, even I have a limit.

So whoever you are, thank you for reading this. I hope it brings you some comfort or helps you feel less alone in your struggle. I will try to write regularly again.

And if you're reading this and have something to share, please do!

Making changes!

As you can see, I'm in the middle of making a lot of changes to the aesthetics, focus and structure of this blog. Please bear with me! I'm figuring this out as I go. Hopefully it will look and function much better very soon.

Dear Readers,

I have readers?

I have readers!

Trips to the doctor or lab over the last 6 months...

How many times have I been to the doctor, to a lab, or to a medical facility for a specialized procedure or test over the last 6 months you ask? Well, the answer is...

40!

That comes out to, what, once every 4 days? That sounds about right. To be honest, that feels like a conservative estimate. 

I found this out when I pulled up my claims summary for the last 6 months on my health insurance website. 

Just a funny/sad/interesting/startling/depressing/ fact. You're welcome!

Good News!

I know, it's hard to believe, isn't it? Well, I have managed, with the exception of today, to get the dose of Methylprednisolone down to 1 tab a day! I felt so relieved when I woke up yesterday without an increase in inflammation after reducing the dose. Of course, the lower the dose, the better. I also woke up yesterday to an increase in energy. Now that fluctuations in energy and inflammation are coinciding, I am beginning to trust my doctor's opinion on the role of steroids in managing this recurrence of the infection. 

As I may have explained in previous posts, my immune system isn't fighting the infection properly (big surprise!). It's not that my immune system isn't strong enough to fight it; it's that it's reacting too strongly. Basically, it is responding inefficiently to the virus and creating unproductive inflammation. So, instead of using all available resources to reduce the viral load, like it should be doing, my immune system is allocating much of its resources to producing unnecessary inflammation. In my case, it causes Hyperparesthesia, or exceptionally heightened sensitivity to touch. It's much like what happens when my immune system is fighting a bacterial infection, like Lyme, and my joints become incredibly inflammed. For me, and many other patients, when my immune system tries to fight this viral infection, it causes Hyperparesthesia. It can be excruciatingly painful. When it's bad, my skin hurts so badly that clothes, showering, and even lying in bed are all incredibly painful.

That is where steroids come in. My initial concern was that steroids would suppress my immune system. As my doctor explained, that is actually a good thing in this case. My immune system is actually over-reacting to the virus and essentially wasting resources on this unnecessary, unproductive inflammation. That is why he prescribed an anti-viral and steroids to be taken together for roughly 6-8 weeks. The combination will make it more of a fair fight for my immune system. That way, the anti-viral can do its job by reducing the viral load and the Methylprednisolone will manage the inflammatory response. After a while, the virus will be contained and the inflammatory response will go away so I won't need the steroids. 

All in all, it makes sense that I would experience fluctuations of the most classic mono symptom, fatigue, along with fluctuations in inflammation. It is more evidence that my infectious disease specialist is on the right track with this protocol. And, the fact that I'm now able to get by on only 1 tab a day and feel a significant increase in energy hopefully means that I am making progress and getting better! Fingers crossed.

Increased Heart Rate and Blood Pressure

Last month, my blood pressure was at an all time low. I was consistently getting the lowest readings of my life. My blood pressure has always been low, low enough to cause symptoms of lightheadedness and weakness. Even though it's always been low, it still fell within normal limits. On average, it was about 105/70. Now, I've been on beta-blockers for years now and in addition to keeping my heart rate normal, they also lowered my blood pressure. Starting about a month ago, though, the readings suddenly plummeted to 90/56. My cardiologist told me that if the systolic pressure (the top number) goes below 90 that I should call him. It never did go below 90 so I just kept his advice in mind and monitored it. 

Then the inflammation and fluid retention started and I was put on steroids shortly after. Since then, my heart rate has been consistently 120-130 and my blood pressure sky-rocketed above normal limits to 135/85. Those numbers are too high for anyone. Instead of taking my beta-blocker at bedtime like I have been doing for over 2 years now, I started taking it early in the day to bring my heart rate and blood pressure down. About an hour after I took it, my heart rate would come down to about 95 or 100 and my pressure to about 115/75. Although it was much better, a heart rate of 95 or 100 is still too high. The only other things I could to manage it were to drink lots of water, do relaxation exercises and avoid caffeine, all of which I was already doing. Since I was still in the middle of battling severe inflammation, it was hard to know what was causing the spike in my vitals. One theory is that it was my body's "fight or flight" response to the overwhelming inflammation. The other theory was that is was caused by the steroids themselves. It was really hard to sort it out while both the inflammation and the dose of Methylprednisolone were high. But, after about a week of the inflammation being consistently well-controlled, both my heart rate and blood pressure were still super high. 

For the record, the way I knew they were both high was because I had several doctor's appointments where they took my vitals and every time I went to the grocery store or pharmacy, I used the machines there. I also monitored my heart rate at home by checking it periodically throughout the day. 

Now that it has been nearly a week of well-controlled inflammation and a significantly lower dose of steroids, both my heart rate and blood pressure have come down. Yesterday at the pharmacy, the reading were 117/75 and 101. Now, a heart rate of 101 is still too high and is considered tachycardia, but that was a pure reading because I had not yet taken my beta-blocker. That means that now my heart rate on its own is the same as it was last week shortly after taking my beta-blocker. That's a huge improvement! Again, it's hard to sort out, but now I feel pretty certain that the high dose of steroids was causing the increase in both numbers. That is one of the side effects of Methylprednisolone, along with flushing, mood swings and increased perspiration, all of which I experienced. So, for all of these reasons, I am happy to be on a lower dose. Maybe before too long I won't need them at all. That would be wonderful!

Lowering the Dose of Methylprednisolone

Over the course of the last week, I have managed to decrease the dose of steroids (Methylprednisolone) significantly. Since the completion of the second Medrol dose pack-a 6 day regimen of Methylprednisolone that starts off at a very high dose of 6 tabs the first day then gradually decreases to 1 tab on the final day-my infectious disease specialist has kept me on Methylprednisolone at varying doses to control the severe Hyperparesthesia (skin pain and sensitivity) and swelling. At first 2 tabs a day was enough to keep the inflammation at bay. My doctor told me that it was ok to take extra tabs for a little while if the inflammation comes back or isn't managed by 2 tabs. For about a week, it took 4 tabs a day to manage it. During that week I was being treated for that kidney infection so it's possible that my body was just overwhelmed and needed some extra support. On one day during that week, I tried to take only 3 tabs one day. The next day I woke up to severe Hyperparesthesia again. This time, it mostly affected my back, neck and shoulders making it difficult to rest because the pressure of the pillows against my skin when I tried to lie down was too painful. So, I went back to 4 tabs for the rest for the rest of that week because it was clear that I was not able to get by on less at the time. 

However, since then I have been able to bring the dose from 4 tabs down to 2! I did it gradually, decreasing it by 1 tab at a time and giving it a few days to see if the new dose was enough to keep the inflammation down. Then I would decrease it by 1 more tab until I got down to 2 tabs. It's been 5 days on 2 tabs each day and the inflammation has been controlled pretty well. There were moments or even whole days here and there where I felt the inflammation but it was mild and didn't call for an increase in the dose. I feel more at ease mentally on a lower dose as well. Methylprednisolone is a powerful steroid; it's even stronger than Prednisone and the idea of being on it at all makes me uneasy. I was in a bit of a hurry to reduce the dose because 4 tabs a day just seemed excessive. Like I said, I feel more at ease about the whole thing now that I only need 2 tabs a day. I also like that my doctor gave me instructions and the the freedom to adjust the dose as needed.

Now here's the exciting part. Since the kidney infection has been treated and I've been stable on 2 tabs of Methylprednisolone a day for 5 days now, I'm thinking of trying only 1 tab today! Of course, this is just a trial run to see if it's possible to get by on a lower dose. If the inflammation returns, I may need to go back up to 2 tabs. Or, if I encounter some other major physical stress, 1 tab may not be enough and I may need to increase the dose temporarily again. No matter what, the fact that the inflammation is controlled well enough for me to try 1 tab is a good sign, I think. I hope that this dose is enough to manage it! So this morning, I only took 1 tab. I will see what happens and report back.