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Overcoming Obstacles

Thursday, December 8, 2016

I got a PICC this week. The process of working with an LLMD and transitioning back to antibiotics has been fraught with logistical obstacles and strong emotions. But before I get to those, I once again learned the lesson that I can get well enough to function for a short time (2-3 weeks) but that it takes a long time to recover after I’ve been active.

A bit of travel

My mother wanted to go to Italy for a canonization ceremony, basically endowing sainthood on a catholic who has died and generated verified miracles, and it worked out that I would accompany her. In theory, this was a good idea. But I wasn’t well in the weeks before the trip. I’d had a bad reaction to some antibiotics I’d taken and was off all treatments for a few weeks. I had barely enough time to use the coil machine to get my symptoms down to a level where I could do something for part of each day. I made a plan for the trip: a TCM herbal formula, a bunch of antioxidants, some pain killers, and artemisia.

When we arrived, I started the TCM herbs (some pills, some powders). I rested and felt grateful that at 81 my mother can travel and that she prefers a slower paced itinerary. I herxed for a few days, especially with pain in my kidneys and trouble with my bowels, but I had energy thanks to the artemisia. We participated in some group activities with nuns who were celebrating that the founder of their order had become a saint. But we also took time to head back to our lodgings and rest.

I had some troubles in Italy, particularly with my feel swelling up, fatigue returning after the first week, and an increasing pain level. But I hung in there. The combination of supplements I took wasn’t designed to keep me well long term or to help me make another strike against the infections. It was just to keep me going for a few weeks.

Before returning home, I stayed with my mother and the rest of my family for a week. Daily naps were a necessity to participate in the Halloween festivities with my nephew and niece. But by the time I left, I was about to crash.

Test Results

When I returned home, I went back to the coil machine for a week. I had finished the TCM formulas, and the artemisia had stopped working. I was a little surprised that I herxed right away as I coiled for all three infections: Lyme, Bartonella, and Babesia. I had headaches, joint pain, bowel problems, sleep problems, night sweats, kidney pain, etc. I felt strongly that the months I’d spent on Alfons Ven remedies had allowed the infections to make progress against my body.

After a week, I had an appointment with my LLMD. The results included some surprises and some confirmations of things I’d believed all along. I had positive tests for Lyme (as expected), my first positive test for Bartonella, my first positive test for Babesia (direct test, not antibody). The Bartonella test was confirmation of what I’d believed all along after a series of ambiguous results and had seen evidence of through herxing after coiling with the appropriate frequency. The Babesia test was not exactly a surprise, but it was unpleasant to acknowledge what I already knew from the migraines, fatigue, and nightsweats: the Babesia infection is active.

Then there was news that was helpful. I had positive tests for Chlamydia pneumonia and Mycoplasma pneumonia. (I had weak positive tests back in 2008.) These two infections would explain why I’d been having recurring bronchial inflammation as I whittled down the Bartonella infection. I have experienced what another user of a coil machine told me early on–as each infection gets weak, another infection it was suppressing gets more active. If I were still using the coil machine, I’d begin working on these infections, even if I didn’t herx from them.

I’m still positive for Epstein Barr (high enough titers to consider an active infection). It is at the bottom of the list to treat because when the other infections are in check, the immune system can deal with EBV without assistance.

The biggest surprise was that I tested positive for relapsing fever caused by a borrelia genus bacterium. In my mind, this was the missing infection that I couldn’t treat because I didn’t know it was there.

The good news is that many of these infections can be treated with the same antibiotics as I would take for Lyme and Bartonella. The bad news is that I have a lot of infections to deal with.

Treatment Plan

When my LLMD and I went through the list, she told me I had two options. I could continue to self-treat. She could in no way advise me there, but she was happy to have helped me fill in the missing diagnostic information. If I were to self-treat, she would advise against pregnancy.

The second alternative was to go down the allopathic route, again. It would entail oral treatments for Babesia and intravenous treatments for all the other infections (except EBV). She told me that Babesia causes miscarriages, and that we should try to get rid of it, if possible, before I try to get pregnant. She thinks it is possible to get rid of it, beyond the kinds of remissions I’ve had with the coil machine and others have had with drugs. But she cautioned that there is no way to guarantee that it is gone rather than in remission. I asked why the drugs would work this time, since they clearly hadn’t when I treated Babesia for 2 years. She said that compared to my last LLMD and the information he had available 6 years ago, she will be much more aggressive in the treatment. I decided to get started.

I had imagined I would need intravenous antibiotics. I was hoping to use butterfly needles rather than a PICC, like I did in 2010. My LLMD was very clear with me that I needed higher doses of ceftriaxone than before, as well as other drugs that cannot be delivered through a butterfly needle. She explained how to get well enough, and to knock down the infections enough, to be able to have a healthy pregnancy. At the same time, she told me up front that I would still need to take oral antibiotics during the pregnancy because it is almost impossible to be sure that the infections will not reactivate. She gave me statistics from Lyme pregnancy registries that helped me realize she was right.

I couldn’t agree to the PICC when I was sitting in her office. She gave me some written information and told me to call in a week with questions and/or my decision about whether or not to go forward.

On the way home in the car, I cried. I cried for the years of my life that I’ve lost to this illness. I cried for the money spent on treatments that barely made a dent and for the lost earnings. I cried because it is scary to go back on all the drugs that made me feel even sicker before. I cried because I don’t want to be sick for the rest of my life. I cried because it seemed so easy to give up, right there in that moment, on having a child. I cried and freaked out. And when I was done, I listened to my husband’s reaction to the doctor visit. He told me that I was under no obligation to go forward with the treatment or anything else. He knew that even with all the treatment in the world, there was no guarantee that I can get pregnant at my age (and we’ve already decided not to use assisted reproduction because my body has been through too much already). But he also said that if there was a real possibility that I could get well, he would consider the treatments to be worth it.

He settled my emotions for the night. I needed another day and a few conversations with my family and friends to realize that I’m ready to take another swing at these infections. I’m stronger than I was when I stopped taking antibiotics. My body will be able to do much of the work, rather than relying completely on the antibiotics to get rid of the infections. Even if things get worse for a while, I have a real chance at pursuing my many dreams and goals.

Side Note on Antibiotics

I pondered for a long time on why antibiotics work for some people and not for others. I have multiple theories. When it comes to the few NIH studies, the fact that co-infections were not considered might explain why people felt better on antibiotics, though not fully improved, and that in the absence of antibiotics, there bodies were overwhelmed by the multiple infections again.

Then there is some of the reading I’ve done on the internet by LLMDs who have had the guts to put out their thinking and educate patients and families for free. It looks like some of the treatments being used for quite a while weren’t strong enough to overcome the fact that the patients had poorly functioning immune systems. Stronger doses. Multi-pronged attacks. Longer protocols. Maybe, all together, these things can compensate for faulty immune function.

I knew, at some point, that my immune system came back online, during the second or third year of coiling. I got a cold. A bona fide cold. One that came, knocked me out, gave me a fever, then left without additional assistance from drugs (or coiling). I celebrated it, not because I wanted to feel sick, but because it was an important step in reclaiming by my body from the tick-borne infections.

I read, long ago, that antibiotics increase the body’s ability to resist infection by 30%. Although I can’t find a source for this, the idea was one that an immunologist friend of mine agreed with. If one side of a centuries long fight increases its strength by 30%, the war changes. Fewer people die from previously fatal bacterial illnesses. Some still do, especially people with weakened immune systems. The microbial community continues to find ways around our new weapon (think antibiotic resistance), but understanding the principal behind the contribution of antibiotics might help us understand why they take so long to work in patients with chronic infections.

What we know about chronic Lyme Disease and several of the other tick-borne infections is that over time, they hi-jack our immune systems to prevent our immune systems from attacking or eliminating them. In a patient who has been infected for 7 years, like I was when I got diagnosed, the antibiotics are the only line of defense. That isn’t how antibiotics have been used effectively. They work when they provide a boost to an already functioning immune system.

What this means for many patients is that boosting their immune system (or redirecting its functions to include fighting chronic tick-borne infections) might be required as part of antibiotic therapy. It’s nice to take reishi or other immune system modulators, but those are not strong enough to reboot a person’s immune system.

When I wondered what was different now, as I try many of the same antibiotics as before, the answer I came up with is that I am different. The coil machine reduced my infection load (without the assistance of my immune system) enough to allow my immune system to function again. This time, the antibiotics are there in conjunction with a functioning immune system, rather than doing the work alone.

Obstacles

Once I got on board with doing the full treatment plan, I started looking at the cost. In the crazy way that healthcare operates, almost nothing I will use is covered, and certainly not without months of appeals. Instead I’m hunting on GoodRx.com for the best deal for the oral and injectable drugs, and using a mail order pharmacy for the iv drugs. I paid for the PICC insertion out of pocket.

Nothing is cheap. As my LLMD lamented with me on the cost of a PICC or using an infusion center, I had to try not to laugh because she’s incredibly expensive, too. But once my husband and I figured out how to pay for it all, I had other things to work out.

Like what? Drug allergies. I had a list that was way too long. There was a member of the 4-drug combo that sent me to the ER in September. Only, I didn’t know which one it was. I also had reactions to several drugs, including ceftriaxone that needed to be evaluated before I got started with a PICC line.

The main thing I learned from the allergist is that I have vasovagal reactions to needles and pain. I already knew that menstrual cramps could trigger a vasovagal reponse (Surviving Vagus), so could urgent bowel movements. What I didn’t realize is that the tired, woozy feeling I sometimes get from blood draws, or the massive drop in blood pressure I used to have with iv ceftriaxone through a butterfly needle were also vasovagal responses. I got to cross off several drugs from the list (some that we actually tested and the rest as a result of this finding). Then we tested two of the drugs I’m going to use and I was good to go. (The drugs that cause rashes are still on the list but not retested at this time.)

The next problem was that once I had the PICC line in, it didn’t work quite right, right away. The nurse fixed it, but then the same problem occurred at home. This led to a round of phone calls to my doctor, the PICC insertion company, and the local infusion center. It also led to a day of near panic (probably unwarranted, but I’m not used to having a one end of a catheter sticking out of an open wound in my arm and the other end right near my heart). Once that was resolved, I could pay attention to the fact that I had a dermal reaction to the antiseptic solution the nurse used on my arm when he inserted the catheter and applied the dressing. Topical cortisone worked for the skin not under the dressing. Changing the dressing using a different antiseptic generated some relief. But this morning, I’d had enough. It was time for some oral antihistamines to calm the inflammation.

I’ve finally started the intravenous antibiotics. I’m less stressed by anticipation and all the challenges I’ve already faced. My mind is clearer. I’m ready to get back into the swing of things and handle the pile on my desk, my email inbox, my Christmas list, and the rest of my life.

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