As I go through the list of herx symptoms in my head or on the blog, it reminds me of how bad I still feel on a regular basis. These feelings can get overwhelming, making me wonder if I will ever get through it all. The joint aches, belly problems, headaches and fatigue get me down.
When I take stock of how bad things were when I started coiling, or to go back to right before I got diagnosed and started antibiotics, I can see better how far I’ve really come. Some of it has to do with a decrease in the frequency and severity of symptoms. Some of it has to do with reclaiming my body from the horror of these infections. In no particular order, here are some of the things that have gotten WAY BETTER, and let me know I’m not going to be sick forever.
The way I knew I got sick was that my legs collapsed underneath me. Twice. I wasn’t sure why. It had started with a funny feeling in my legs. Not a tingling exactly, but an awareness that something wasn’t quite right. My attention kept getting pulled to my legs.
Over the course of a few months, I mostly lost my ability to walk, to stand without assistance, to move them of their own accord without using my arms to make it happen. The joints hadn’t seized up yet. The nerves stopped talking to the muscles.
Things got worse from there. I had incredibly hypersensitive legs, as in if something touched my legs, I would feel pain in that spot for hours. HOURS. It seemed bizarre, even psychosomatic. But there it was. Pain was really bad in response to extreme sensitivity in my skin.
Eventually my hip joints became part of the problem. They were stiff and painful and wouldn’t hold up my body. The muscles in my legs withered away.
Things improved after more than a year on antibiotics. Then the dramatic improvements happened during a series of colonics and again during a few months of Rocephin. Although I ditched the cane, my gait was still awkward and unstable. Walking short distances tired me out for a whole day.
After a year of coiling, my hips loosened up. I started to walk “normally” with the gait of an able-bodied person. I could walk faster. I could walk further. It still tired me out. But I had a sense that things had changed dramatically.
Now I can go for long walks on the beach or in the slough near my house. I can walk for a half hour or 45 minutes. I have defined muscles in my calves again. I don’t have to think about walking. I just do it. Walking has become a stable motion for me. I’ve come a long way.
I still get headaches. I get mild to moderate headaches almost daily. But…
I used to get migraine type headaches on a weekly basis. I used to get intense, blinding tension headaches every few days. I used to have light and sound sensitivity most days of the week, though sometimes I was more sensitive than others. The pain prevented me from using the phone, the computer, turning on lights or opening curtains. My head felt like it was in a vice that I just couldn’t get out of. If I had a few days of no headaches I would celebrate.
The migraines have stopped since the active Babesia infection is gone. It happened the first time I vanquished Babesia. The headaches came back when the dormant Babesia became active. They have disappeared since I got rid of the active infection.
The tension headaches are less frequent. I had quite a few of them when I began working on the Bartonella infection. After it got below a certain infection load, they seem to appear only when I increase the coiling time on my head and spine. When they come, they still hurt immensely. However, I’ve discovered how to shorten them with the assistance of my husband giving me a scalp and neck massage.
As I got sicker back in 2007, my blood pressure tanked and stayed low for several years. No amount of antibiotics, microbials, salt, water, electrolytes or anything else could sustain an increase in blood pressure to a comfortable 90/60 mmHg. It was horrible. It made me tired and lightheaded and dizzy and nauseated. Really the low blood pressure sucked the life out of me.
For about a year, I took florinef. It helped somewhat for a few months. I started it shortly before I began Rocephin. But the Rocephin gave me ugly herxes and made my pressure drop over and over. I used to take a liter of IV saline after the Rocephin to get my pressure up long enough to make it home from the doctor’s office.
When I started coiling, I didn’t see a difference in my blood pressure even with florinef. About seven months into coiling, I started having noticeable side effects, particularly a series of fungal infections in my skin. So I got off the drug. Around the same time, I was coiling more for Babesia and making real headway. Once I got rid of the active Babesia infection, my blood pressure stabilized on its own. The only time it drops now is when I have bad Lyme herxes, on the first day of my menstrual cycle or when the Babesia reactivates.
Life is very different when I’m not constantly fighting off the feeling that I need to lie down. My heart doesn’t bother me nearly as much when my blood pressure is in a decent range.
Before I was disabled by Lyme Disease and the other tick-borne illnesses, back when I was in the earlier stages of the illness, I had intermittent problems with my menstrual cycle. By the time I became disabled, it was every month, really bad: vomiting, diarrhea, weakness, chills, sweats, shakes, somnolence, blood pressure drops, lightheadedness, headaches, etc., oh yeah, and cramps, too.
My period got lighter and lighter and the cycles took longer and longer to come. Yet the symptoms kept getting worse.
Things turned around partially with metformin. My cycles got back to a normal length. As I’ve treated both Lyme and Bartonella, the number of bad cycles a year has decreased. In between the bad ones, I have cycles that make me really tired and give me cramps and headaches. In the grand scheme of things, not terrible.
I’ve tried coming off metformin but things got worse again. I’m still planning on stopping it at some point.
Then there is a related topic. My libido died an unceremonious death for several years as the rest of my body shut down. Around the time of taking Rocephin, it started to come back before fading away again. With the Bartonella treatments over the past year, it is about as close to normal as I can imagine it will get. I definitely feel more alive.
When I was very sick, my skin was very thin. My whole body was smaller and had a wasted look to it. I wasn’t exactly emaciated, but I did seem somewhat malnourished. For a long time, it seemed that my skin didn’t protect my bones and nerves from the bumps and pressures of the environment (like sitting or brushing against a wall).
Only since the beginning of last summer has my skin started to function again as a barrier between me and the outside world. Now I’m closer to normal. There is a thickness to my skin, not a lot of fat, but some cushion, that allows me to touch things without being damaged. I still bruise quite easily. I supposed there is still room for improvement.
This list could go on. I am sturdier. I’m still tired pretty often, but not dead tired every day. I can type. I can use a computer. I can listen to people or music or ambient noise without triggering a headache. My ability to concentrate has improved.
In so many ways, I feel like I’m not there yet. “There” meaning healthy and able to function. I’m not there yet, but I’m a heck of a lot closer than I thought I’d get when I started coiling.
Speaking of coiling, I went up to the draft 5 program for Bartonella today. I thought I’d wait till the end of the week, but I felt adventurous this morning. I feel a headache trying to get started on the right side of my head. I’m fighting it, not very successfully, through mind control.
Taking welchol last night blunted the full effect of the Lyme herx. I can feel it as fatigue, but I’m not as achy and weepy as I was on Saturday.
In celebration of National Poetry Month…
Roses are red.
Violets are blue.
I’ll get better.
So will you.