Lyme Update

When the anniversary of my diagnosis of Lyme disease comes along each year, I get a little freaked out. It’s irrational. But it does make me pause and reflect (which isn’t a terrible thing to do necessarily).

After about 4 years of experiencing what appeared to me as random and some migrating symptoms, after seeing 7-8 different doctors, mostly specialists, after having an MRI, a variety of blood test (more than once), and after becoming more and more ill, I lucked into seeing a doctor who tested me for Lyme disease. By the time I was diagnosed, I was very sick; I had severe daily headaches, joint pain, numbness in my feet, insomnia…the list goes on.

This March, it has been 6 years of treatment for Chronic Lyme disease. Ten years of being severely ill. And yes, I have seen improvement. The lasting symptoms that seem to never end are the chronic fatigue, the joint pain, the insomnia, and the memory/processing issues. Considering how long this list was in 2013, I can only be grateful for the progress I have made.

However, this anniversary also reminds me of what I am still struggling to deal with on a daily basis. That’s the part of this that gets me down sometimes. It’s hard not to compare the Before and the Now. And this comparison is only amplified by the years that have gone by.

The lasting and most enduring symptoms of this illness, at least in my case, are the fatigue, the insomnia (it’s so bad right now), the joint pain, and the memory/cognitive issues. Sometimes, it’s tough to see if there is any progress. I feel like these are things my doctors and I have been working on for the past 6 years. While I hope they become less severe, I also simultaneously realize this may be as good as it gets. I’m not sure I am at the acceptance stage in this case.

I hope spring is opening its doors in your world. Here in Houston, we are enjoying the mild temperatures before the real heat begins at the end of this month.

Best to you and yours, Belle

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14 thoughts on “Lyme Update”

    1. I am so sorry! It is the worst for me right now. While it’s a symptom I have struggled with since contracting Lyme, recently, it is insane. I am getting maybe 4 hours of sleep a night and not restful sleep. I have tried everything.Both of the time changes this year have really messed with me. Have you found anything that helps at all?

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      1. Well, I’m trying the Sleep & Serenity Kit from Vital Plan, but it doesn’t seem to be helping. I go between taking clonazepam and Benadryl. I can usually fall asleep with just melatonin, but I wake up early and have to take a clonazepam to get back to sleep.

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      2. I take Lunesta, time released melatonin, and doxepin. I can usually fall asleep ok but I’ve been waking up like 2-4 a.m. and then can’t get back to sleep. At this point, I would try anything!

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      3. I’m trying to get off the drugs, but it’s absolutely impossible. I’m starting to think I might need to see a sleep specialist. I have more seizures when I don’t sleep too, so that’s no good. When did sleeping become so difficult?

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      4. Same for me. I finally got off Zoloft but I have the Lunesta and a couple of others I still take. My integrative doctor has added some hormones which are helping a tad. But just not enough, so Lunesta it is! I’m sorry that the sleep issues end up giving you seizures. As if lack of sleep isn’t enough to deal with.

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  1. I am in still in the midst of a several years worth remission and unable to read or process much. I tried in network doctors for many years and partial IV treatment then antibiotic pills years later allowed by medicare did not work this time. I wound up getting sicker. Now I am trying the expensive out of network Dr Morrison center in NYC out of desperation. I found out about it through the Lyme group here. I have little faith in herbals which they started me on because they never worked before. The low dose naltrexone seems to help some with the nerve pain. And I can’t say if the Vitamin C infusions work or not. The doctor there did help treat my congestion problem and I am no longer coughing all the time. I would like to be able to get out and do photography instead of being locked indoors. I don’t have sleep issues but headaches, pain, brain fog and fatigue plus other immune related disorders are enough. I believe they will find a way to help us.

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    1. Hi Sherry, I really hope your new doctor is able to help you and inspire you. I also did about 3 year of antibiotics along with herbals. I really didn’t see much improvement. But then, I also added another doctor who started working on my thyroid and hormones and that has helped a lot. I’m still dealing with an assortment of steady and chronic issues but this is way less than where I was 3 years ago. I’m considering the Vitamin C IVs. I know how difficult it is to be trapped indoors and in bed or on the couch. Hang in there.

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