My Lyme journey from my brothers perspective, part 2

If you haven’t already read part 1 here.

WHAT WERE THE WORST SYMPTOMS PHYSICALLY, EMOTIONALLY? DOES IT AFFECT ALL OF THOSE THINGS?

Joe: It is all-encompassing. I can only tell you from an outside observation because I have never had it. I have only watched other people have it, which is an awful experience. The best way I could describe my observation of you and mom was this. Someone took electrical generators and placed them in your nerves and just turned them on and left them on in varying degrees usually they were on pretty high. I do not know of another good way to describe nerve pain. If anyone has ever gone through it, they will know what I am talking about is its own thing. Unless you have watched someone experience it or have experienced it yourself, it is hard to describe. It is like somebody is electrocuting you or burning you 24 seven.

Karen: Burning is a better description. When the pain was the worst, I was completely incapacitated. I literally could not move all I could do was focus on, keep breathing. It felt like my whole body from the inside out was burning. It was more intense than a physical burn where it burns you from the outside. I felt like I was burning alive.

Joe: It was pretty obvious when it was that bad it was not subtle. Nothing that nothing to that degree is. None of this helps with Lyme disease. It gets into your brain and messes with your perception of things, messes with your personality. Lyme disease can get across the blood-brain barrier to my knowledge not very many things can cross it. It is an excellent barrier between your brain and the rest of your body, and when it gets past there, it turns you into a child mentally.

Karen: You mean as far as your ability to communicate in a…

Joe: Mature way.

Karen: Yes, your ability to communicate maturely or rationally.

Joe: It was a blurry line between the two it wasn't entirely one or the other.

Karen: It was almost like these two people were coexisting in me. Me and the sick me, often I felt that I consumed by sickness that I was trapped. It was like these two people were coexisting in me I was losing the battle to the sick me.

Joe: You didn't change much, but you are different from the experience. But I don't see any way you couldn't be different, whether it messed with your head or not, just from the physical experience. You are still the sister that I knew before you got sick.

Karen: I feel like I blamed other people around me for my problems.

Joe: I would say it would be hard not to in that position. If you did, I ignored it because I thought it was not relevant.

WHEN I WAS AT MY WORST, WHAT WAS IT LIKE MENTALLY?

Joe: It was like watching somebody being consumed from the inside out. There were some days I would wake up and check on you in the morning and make your breakfast walk into your room, and think. Is she alive today? Good, she is still breathing. Okay, let's start the day. I remember that very vividly.

Karen: Mentally, I had shut down because I only had one thought. I was in such bad pain I could not think anything else or try to figure out anything else except that. It was all-consuming.

Joe: The longer it lasts, the worse that it gets. It is like when you burn yourself or stub your toe.

Karen: When you first feel that pain, and that is all you can think about. Imagine that for a long time.

Joe: But it goes on for years. It turns into something completely different. It is not something you can say, I am hurt, but you can bear it because you know it will subside.

Karen: Yes, when you know it will get better, it is easier to bear.

Joe: That is part of it. If I break a bone, it gets put in a cast, and it heals. It is going to suck for a few months, but you will be fine. With Lyme disease, you don't know, and no one around you seems to know it either. So you're just in this, this void of knowledge. It's despairing, very despairing, to watch and I am sure to experience.

Karen: For me, the first two and a half or three years were the worst when I was deeply depressed. Before that, I was already not in a good place, and then on top of that Lyme disease was devastating. I was done.

Joe: It dragged you down into the very depths.

Karen: Yes, it did.

WHAT DID I DO FOR TREATMENT? WHAT TREATMENTS WORKED THE BEST?

Karen: I took multiple antibiotics for five years as well as herbal tinctures. The side effects of all of that were rough. I also did intramuscular antibiotics in the third year of treatment. They helped a lot with my hallucinations. We were not living together in the same house, but you were around for some of it. I do not know if you were aware or not but I was having these symptoms before I moved out.

Joe: Were you experiencing the hallucinations when you were still working full time?

Karen: Yes, before I got the intramuscular antibiotics they were progressively getting worse. It first started with the things on the wall like pictures and calendars. They would start moving around the room and following me around.

Joe: That is disturbing, I never knew about this before.

Karen: It was not all the time at first. I think it took a while for people to believe me. That I was not just saying things, it is happening. I only talked about it with my naturopath I think. It took a couple of appointments before she realized that this was serious and becoming so consuming that I did not know what reality was anymore.

Joe: That was not a good place to be.

Karen: I did the intramuscular antibiotics for four months. The injections were every few days.

Joe: That was horrible to watch. I did not even see all of it. I can not even I could only imagine what it was like to experience. That was horrible to watch.

Karen: Thankfully, insurance paid for it, but it was expensive. I got the shots in my backside, sometimes by mom and sometimes by my doctor.

Joe: I remember holding your hand and telling you to look in my eyes and ignore what was going on the best you could and to hold on. You were holding my hand is pretty much as hard as your muscles could. You were not hurting me because your hands were not that strong at that point, but I remember that very vividly.

Karen: The shot was thick, the injection took a long time about five minutes, and it had a big needle. I made sure that I never saw it.

Joe: Yes, the needle was massive.

Karen: I purposely never wanted to see what was going on. After the antibiotics were injected they extremely painful the needle alone because of its size was painful. That was not even the worst of it. After it was over the pain would get worse and worse for three or four days after. By the time it was finally over three days later, it was time for another one.

Joe: People may not realize what exactly you are getting injected with. Most people think of an antibiotic shot, and they think it is nothing too serious. They were several levels higher than regular antibiotics in terms of concentration.

Karen: But I am glad that I did it. I was cornered into doing it, but I am happy I agreed to it because it did make my hallucinations go away.

Joe: You got a lot worse during the process yet after you were so much better.

Karen: Because it was an injection it bypassed my intestinal system. Which protects the digestive systems healthy bacteria more than oral antibiotics would.

Joe: I remember them having to hold you down on the table when you were getting shots.

Karen: I do not remember that.

Joe: It was about to that point.

Karen: In some people like mom, when she got Lyme disease the second time, antibiotics are not an option. Antibiotics are hard on your body and digestive system.

Joe: What other things did you do that worked?

Karen: There are other treatment options besides prescription antibiotics. Whether antibiotics are right for you or not is individual to every person. Looking back on my treatment and what I have been doing more recently, I would not have chosen to be on antibiotics for as long as I was. I would have chosen more to support my body instead of just trying to kill the Lyme all the time.

When your body is that sick, it is often not just Lyme disease that is making you sick. A lot of other things are probably going on that your body needs support to handle.

Joe: I noticed that when you get sick with Lyme disease. It goes round to start sabotaging other parts of your body, then they start collapsing, and you don't just have Lyme disease you have other complications along with the Lyme.

WHAT WERE THE MAIN THINGS THAT WERE CRUCIAL IN GETTING YOU BETTER?

Karen: There are some definite things I would say that helped, not as far as treating Lyme disease but helped me, health-wise getting better. I would say acupuncture was huge. Acupuncture had nothing to do with killing Lyme disease. It was huge for me in regaining my mental and physical health back. Supporting my body with nutritional therapy, Supporting my body energy-wise by supporting my mitochondria so that they can make energy, so that they can function well.

Joe: To thrive?

Karen: More like they can do their job instead of going into defender mode or shutting down (cell danger response). I was also nutritionally depleted, which when your body is healthy and its nutrition it is optimal, can survive an attack. If my body is depleted, and on top of that being sick, I could not do it. So, acupuncture, supporting my body, supporting my mitochondria so that it could work, and the brain retraining program (DNRS).

Joe: What is that?

Karen: It is neuroscience that you can do at home, @sarahjacksonpanther sums it up the best “My limbic system was injured as a result of pathogens attacking my body for years, and as a result, my body was never able to heal. A healthy brain is essential for a healthy body. Now I am rehabilitating my limbic system using a program that’s helped many others with similar limbic system impairments heal. As my brain heals, my body will also heal.” 

Acupuncture helped me get out of depression, not that I do not have it now to a certain extent. I got a lot of pain relief from it as well. It was the people around me that noticed a change before I did with acupuncture. So when you are screaming in pain, your brain is not on a neurotransmitter level, and an electric conducting level is not in a healing state. When you are like that 24 Seven because your body is in pain and sick, an hour of relief during acupuncture makes all the difference. 

All of these things were not treating Lyme disease, but health-wise it helped me a lot.

Joe: I am getting the impression that when people think they need to treat Lyme that is not always the case, that is not all you need to do.

Karen: What helped me the most in treating my Lyme disease has not necessarily been treating my Lyme disease, although that was an important part. What has helped me most in regaining my health to where I am today has been alternative and supportive therapies. Because your body, when it gets the raw materials and tools, can do what it is supposed to do naturally at keeping you healthy. It is good at that yet it can not do that when it can not do that.