Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Monday, October 12, 2015

The Aftermath of Lyme


Image result for sign for bumpy road ahead

I've wanted to write this post for a while, but hesitated because I didn't want to discourage anyone who is going through Lyme treatment currently.  Frankly, the last thing I wanted to think about when I was in treatment, was how my life might be different once it was all said and done.  My focus was on getting well enough to be the wife, mother, and teacher I was called to be.  And those things I certainly achieved in the end.  Therefore, if you are in the researching phase, or just about to start treatment, or even in the thick of your regimen, please know that I simply want to share my experience and give people a taste of what the future might bring after the fallout.

Firstly, let me encourage you by saying this:  I have no regrets whatsoever for going through Lyme treatment!  Long-term antibiotics (4 years' worth!) literally gave me my life back!  I have just begun my fourth year of teaching post-Lyme, and some days I still marvel at the miracle of being able to do my job again, especially considering that I am on my feet all day and have very little time to give my brain a rest throughout the work day.  I cook meals, clean the house, shop, organize my family's social calendar, and chauffeur my kids.  Just like any other mom!  I am grateful, especially on this Thanksgiving Day.

What, then, are the bumps in the road?  What has Lyme left me with that I wish I could still overcome?  The following things are my personal experience, and I do not want to imply that everyone will travel the same path.  But I don't think that most people emerge from Lyme unscathed.  Here are my continuing issues:

1) Body pain!  Oh the annoyance of constant pain!  OK, it's not unbearable or anything, but the stiff muscles and sore joints are just constantly there.  When I get up in the morning, I feel like I'm 80 as I hobble to the bathroom.  My left hip and my feet are the worst.  Getting up from a chair after sitting for a while is not fun.  It takes a few minutes to loosen up.  Why is this happening?  Clearly, there is inflammation in my body.  In all honesty, my diet hasn't been clean lately, so this could be exacerbating the problem.  In an effort to help my body, I've decided to go grain-free and sugar-free for a time.  The first 4 days showed a marked improvement in my pain.  It was quite miraculous, actually.  I could suddenly move and bend without much pain, and the stiffness in the morning was reduced by about 70%.  I'm going to try to continue this regimen, with the hopes of adding back some grains (rice, quinoa) eventually.  I think I'll stay away from wheat, though. Wheat Belly has convinced me that I need to try to live without it.

2) The weight gain!  Oh my!  I really don't feel or look like myself.  My LLMD warned me that people often gain about 30 lbs in treatment.  Well, I've gained about 37 lbs since I started treatment.  Sadly, I did not heed his advice to give up sugar and simple carbs during my treatment.  Slowly, the weight packed on.  I should have listened.  For all of you out there in treatment.....If your doctor wants you to eat cleanly, perhaps sugar-free, wheat-free, or yeast-free, please do it!  It will help your inflammation and help to prevent the weight gain.  I am happy to report that giving up the sugar and grains last week resulted in a 3.5 lb weight loss.  I was very pleased, because frankly, you get to a point when you wonder if anything will work.  Knowing that this weight loss may take a year is daunting for sure, but I have to focus on all of the positives.....not just the weight loss, but the improvement in my skin, sleep, energy, stamina, digestion, etc.

3) The flare-ups.  From time to time, I still get little flare-ups of my symptoms.  There may be a night when I go to bed and the head vibrations come on, preventing me from sleeping.  Sometimes I'm just plain tired.  Sometimes, I feel my body vibrating or hear some tinnitus in my ear.  In the past, I would go back on antibiotics when these things happened, but now I'm more willing to see if the flare-up will subside.  It has done so the last few times.  This leads me to believe that I'm not having a true relapse, but rather some inflammation due to any number of things, e.g., diet, lack of sleep, illness, etc.  This is motivating me to get my inflammation under control through diet, better sleep, and supplements.

4) Supplements.  If you thought you could ditch the pill organizer after your treatment is done, think again.  I think it's important to stay on certain supplements that will assist the body in staying as healthy as possible.  For me personally, I am going to re-start Omega 3, B complex, alpha lipoic acid, vitamin C, iron, magnesium, digestive enzymes, and probiotics.  I've been off everything, including all meds, for a few months now.  However, I see the importance in resuming my supplements, so tomorrow I'll be re-filling my organizer.  Once again, a handful of pills will be my appetizer before every meal.

5) Emotional changes.  It is very strange to see parts of my personality change since my illness.  I used to be a Type A person all the way.  Now, I let things slide a lot more.  I had never been a procrastinator, but lately have been more prone to this.  I don't really have the same fear of illness or death that I used to.  I think it's because I feel that nothing can possibly compare to the hell I went through when I was sick.  It has hardened me somewhat.  I'm not sure if these changes are good or bad, but things are just different now.  Going through something so traumatic is bound to change you forever, in one way or another.

6) Coming to terms with the things I can no longer do.
- I can't skate!  I love skating; I even bought a new, good pair of skates.  But my feet hurt too much.  They start to ache after about 1 minute on the ice. 
- I can't eat sugar or grains. 
- I don't sleep as well.  Insomnia was one of the first Lyme symptoms I had.  Eventually, it got much better with the help of sleep meds, but I need to be very careful now as the sleep disturbances can come on suddenly.
- I have to say no to church and community activities because my body just can't handle it anymore.  I'm tired....a lot.  After working, caring for my family, and school work I must do in the evening, I need to rest.  And I'm not going to feel guilty about it either.
- I can't exercise to the same degree that I used to.  My body is just too sore.

7) Always being on the look out.  Unfortunately, I don't think that chronic Lyme can be cured....yet.  It goes into remission, but the stealthy bacteria hide deep in our tissues and organs.  Dr. Marty Ross, LLMD, believes that most people relapse within 5 years of going into remission.  Great.  I'm always wondering if my flare-ups are actually a relapse.  It's hard to know until you ride them out.  This means that at some point, I'll likely need antibiotics again.  Will my LLMD still be practicing then?  I don't know!  He is heading for retirement.  It's a worry I wish I didn't have.

Well there you have it.  The truth.  But keep in mind that this is my truth, and it won't necessarily be your truth.  Please don't worry!  Focus on getting better, but learn from my mistakes and be sure to eat right and exercise to tolerance.  Give your body all the tools you can to help it grow strong again once your treatment is done. 

Wishing you all the best!



5 comments:

  1. Thank you for continuing to post so openly and honestly Paula. I'll be interested to see whether being more careful about what you eat helps in any way. I'm being pretty careful (not always) and I think that's what has helped my gut heal at least. But some of the Lyme symptoms just won't go away. For me the most troublesome thing is the "sleep vibrations" which I think you call the "head vibrations." It's difficult to heal without restorative sleep. For me, the sleep vibrations seem to start in my chest and fan out from there. This is has been the most constant and most annoying symptom for me and hasn't subsided for a few years although the severity has changed a few times. Did these initially go away for you after antibiotic treatment or supplements or is it too difficult to tell?

    Thanks again.

    -brian

    ReplyDelete
  2. Hi Brian....You're welcome! ;-) Based on other people's testimony, I'm sure that carb-free eating will really help my situation. I'll have to report back in a few months to give everyone an update. My head vibrations absolutely went away with treatment! My LLMD told me that in his experience, symptoms often disappear in reverse order to which they appeared. That was the case for me. The vibrations were the first symptom to appear, but the last symptom to disappear. What helps my vibrations is taking the sleep medication Imovane (zopiclone). When I was very sick, I took up to 7.5 mg. I was then able to reduce to 1/2 a tablet, or 3.75 mg. I stayed on that for a long time. It is non-addictive, but your body can develop a tolerance to it. Also, if you've been on it for over 2 weeks, you can't stop it cold turkey or you will have insomnia. I am successful when I wean off it slowly: I go to 1/4 tablet for a couple of weeks, then I take 1/4 tablet of the 5 mg tablet, and then I go off. I find that the Imovane really works to calm the vibrations and allow me to fall asleep. As much as I hate Big Pharma, I don't know where I'd be without Imovane and the antibiotics!

    ReplyDelete
  3. Thanks again Paula. My vibrations are slightly different than what you describe. At bedtime, I can typically fall asleep with no problem. But then I'll wake up a while later with the vibrations. Once that happens, my sleep is fragmented at best for the rest of the night. Strangely, if I try to nap during the day the vibrations happen immediately.

    I had a really bad experience with Clonazepam a while back and so I'm resisting with all my might to try anything like it. Yes, I know that the "Z drugs" are not quite as addicting as Benzos, but still... And I feel the same way about Big Pharma. But I might have to give in on the sleep medication thing to get some quality of life back. I find that an OTC drug like Doxylamine helps a bit, but not enough.

    -brian

    ReplyDelete
  4. I wonder if following something like the whole 30 would help with the inflammation. I believe strongly that my husband has lyme disease after reading your blog. The head vibrations at bed time hit so close to home. He finds sugar set him back horribly. I tried it myself and I found all my aches and pains went away while on whole 30. If you don't know what it is just google it.

    ReplyDelete
    Replies
    1. I have no doubt that the Whole 30 would help inflammation immensely! I know how much less I ached after being grain-free for 3 days! I think I would have a very hard time giving up the dairy, as the Whole 30 requires. I like the flexibility of having some unsweetened Greek yogurt or some cheese. Perhaps one day I will give it a try. Thanks for your suggestion! I hope your husband finds a good LLMD to help his situation. Until that time, following a good diet is essential. All the best to you.

      Delete