Repeat Relapses

Being out of treatment, I don’t have things to post that often anymore. Or perhaps I’m just too busy. Having gotten back from my sabbatical I’ve been thrown headlong into a very difficult semester. And when I don’t  feel well I have nothing to fall back on because I have no wiggle room left while doing everything I’ve been asked to do and still sleeping and taking care of myself.

However, Lyme doesn’t pay attention to those things, and so I’ve twice in the last 6 weeks had a week in which I had to step back. The first time I didn’t pay too much attention. It was after a trip, I was fighting a cold, and working hard. No wonder I ran into trouble. On the other hand the symptoms were unusual — tingling in my lower limbs is a new symptom (I think), and while the associated fatigue and shortness of breath when moving about were familiar, the tingling concerned me, especially when it was still going on a few days later. I also realized that when I’m tired like that I have trouble focusing (I see double).

This time went so far as to see a doctor and look on the Internet. There are things besides Lyme that could explain this, but that could also just be cyberchondria. She suggested we assume it’s Lyme for now and ordered some lab work.

Then (while waiting for follow up) I had another episode. This time it started while I was teaching and because I didn’t notice (busy concentrating on the lecture) I kept standing and got to the point where when I stopped talking I suddenly realized that I was nauseous, fatigued, and tingling all over. I forced myself to walk back to my office and collapsed for several hours. I am still recovering a few days later, and am severely out of breath after just a bit of motion.

As usual, my reaction to things going down hill is to want to take some action. I feel as though I’ve gone from whole to part me again in these periods, and I don’t like it. I love living life fully again and I am fearful every time I slip. Giving it up once was hard enough. Giving it up over and over again, and living with the fear that it won’t come back each time, is sometimes almost panic inducing. I try to remember that this has always been temporary in the past, and to go forward doing the things I do despite it. I pamper myself (a bath, a sauna, a tv show). I try to let my colleagues know what help I need (disclose) without complaining or feeling sorry for myself. And I inevitably get focused on something actionable. Maybe I go see a doctor, maybe I research conditions online, maybe I reconsider changing to part time. The way it plays out is different every time, but I somehow need to feel that I can do something about it, and if I can’t take a drug and get better then I try other things. I have learned not to trust decisions I make in these periods (and not to go too far down the road of acting on them) but doing nothing is just too much like giving up for me.

So I’m curious: What do you do to cope? How do you get through the slumps?

4 thoughts on “Repeat Relapses

  1. Hi Eric,
    I can certainly relate to many of your thoughts. I’ve had chronic lyme for so many years, been so sick for so many years, but I’m just realizing now that it’s the lyme and the coinfections that are causing most of my symptoms. I also have fibromyalgia, mercury poisoning, and severe back pain. I’ve barely been able to work at all. Well, at least not last week. There are times I feel a lot better, when I get a clearing, bursts of energy, and it’s usually after I’ve done a huge amount of detoxing. Sometimes I’ll feel good for a few days. Sometimes only a couple of hours. Often it’s at night when everybody goes to sleep, after being in bed all day.

    I’ve been doing a lot of research the past few weeks. First, I want to tell you about the salt and vitamin C 72-hour protocol, which I’ve been using since April and it helps a lot. Huge amounts of 1000 mg tablets of salt taken along with 1000 mg Vit C’s and lots and lots of water kills all the bacterias, along with any viruses, candidas, parasites, etc. Look at lymephotos.com for the explanation and specific protocol. Unfortunately I can only take 3 salt tablets at a time, otherwise I throw up. So I take more 1/2 hour after each dose, I end up taking anywhere between 12 and 20 per day. My healer Linda Dean told me about this natural treatment. It’s definitely helped get the lyme under control. Like you I just get hit very hard if I’m under a lot of stress. I was working 3-4 hours most days and then a few weeks ago I had to deal with my 21-year-old son and ex-husband fighting so bad it was physical. I mediated and dealt with the situation for two days straight, and then everybody else was back to work and I was in a bed for more than a week.

    Anyway, when you do the salt protocol, you’ll get worse systems because you’re herxing ( you know what that is, right) . It can be grueling but just know that you’re getting better. I also cut out sugar and alcohol, bread (even gluten free) rice, and dairy almost completely. It all feeds the lyme. I eat organic eggs, a lot of grass fed meat, bean soups, only fruits are apples, and berries, pears.

    From my research during the last couple of weeks I have learned that many people have completely healed with the Rife machine, especially the TrueRife machine. I can send you the links if you’re interested. You need to have the appropraite programs for the lyme and whatever coinfections you have, which means you need accurate testing.

    I called IGENEX in California where I got tested 8 years ago and their costs are outrageous, so I am using a lab in New Jersey called Medical Diagnostic Laboraties. I got the kit and now I need a doctor to order the test. I’m looking for a good lyme doctor who doesn’t use antibiotics, not an easy task. Oh, I forgot to mention I am deep in debt and have no income, so I have to withdraw money from my only asset, my IRA, to buy the Rife machine or pay for any other medical costs.
    .
    My healer has apparently completely healed many chronic lyme patients with the salt/vit C protocol, the Rife machine and the proper herbs.

    I’ve also looked into IV ozone therapy with Dr. Howard Robins, who claims I would get my life back, that he would completely heal me, but he can’t give me any idea on how many treatments I would need. It’s $100 for each one. His estimate is between $500 and $17,000. Ok, that’s quite a range.

    Well that’s all I have to say for now. Hope some of this is helpful. We all have to share knowledge with each other, Maybe together we can fight this thing successfully.

    Best Regards,

    Lori

  2. Thanks for your comments. I have to say that I have been pretty skeptical of salt/vit c (especially with the anonymous website as documentation). Why have you decided against antibiotics? There is concrete evidence for their benefits.

  3. I also have the tingling, sometimes it’s burning. Not good, but it led to a diagnosis and 5 weeks of iv rocephin. I started the salt/c about 10 days ago and I am at the full dose. It’s not fun, but better than IV and it’s cheap. So, I hope you feel better.

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