Jordana
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Member # 45305
posted
So when I wake up in the morning, usually every morning, I actually feel okay. Some days slower than other days, but every morning; I feel all right.
Then about six hours later, after meds, food, being conscious for a while...I completely, *completely* tank and then I get symptomatic with twitching, weakness, trembling, fizzing, etc.
That lasts for about...I don't know, I guess four hours.
Then I pull out of it again and by the time I'm ready for bed I feel pretty much okay again more or less. In fact sometimes I feel so much better I don't want to go to sleep, and by the time my head hits the pillow I'm starting to plan all the things I want to do, which I never get around to because go to getting symptomatic in the middle of the day.
Why does that happen? What is happening? Is it a co-infection? Am I herxing?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I feel worse after eating also. I'm extremely sensitive to many foods now.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Jordana
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Member # 45305
posted
I think eating might have something to do with it but it doesn't seem to matter what it is. Fat, sugar, protein, veggies, caffeine/no caffeine; seems just as bad no matter what.
But then I can eat more and be okay, or starting to pull out of it.
Posts: 2057 | From Florida | Registered: Feb 2015
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TF
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Member # 14183
posted
According to Burrascano, it is lyme:
"There are three things that will predict treatment failure regardless of which regimen is chosen: Noncompliance, alcohol use, and sleep deprivation. Advise them to take a break when (or ideally before) the inevitable mid afternoon fatigue sets in (napping is encouraged)." (p. 17)
He calls it "the inevitable mid afternoon fatigue."
Posts: 9931 | From Maryland | Registered: Dec 2007
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Jordana
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posted
I did remember that TF -- in fact I flashed back to last year when I wouldn't be able to keep my eyes open and felt feverish every afternoon.
But if it's Lyme, what is the Lyme *doing*? Is it activating or reproducing or...what?
If I feel this way every afternoon does that mean my treatment isn't working?
Posts: 2057 | From Florida | Registered: Feb 2015
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TF
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Member # 14183
posted
No. It means that you need to take a nap. Go with what your body wants. Burrascano is recommending napping before that horrible fatigue sets in.
He really stresses this. See this quote:
"CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired." (page 27)
If you don't rest enough, you are ruining your chances of getting rid of this disease. So, try to not ever become overtired. Take a nap BEFORE that happens to you. That is the best thing you can do to help your body fight this thing.
The very last symptom that leaves a lyme patient is the fatigue. So, you just have to accept it and not fight it.
I have no idea what causes the inevitable afternoon fatigue. I just know that fatigue is the hallmark of lyme, and "fatigue" is not a good enough word for what it is!!!
Perhaps getting overtired depresses the T-cell function and that is why Burrascano wants you to avoid that state as much as possible.
See his discussion of lyme rehab on page 31 in this regard. The goal is to strengthen the immune system and not to do anything that weakens it. So, my guess is that is why you are to avoid getting overtired.
If you can strengthen your immune system, and if you take meds that kill the bugs, you can get rid of this disease. So, don't do anything that weakens the immune system--no smoking, no alcohol, no weightlifting two days in a row, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bluelyme
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posted
Is it around then timing of your tini half life?...are you supporting your mitochondrial function?...as lyme effects all functions ..have you done 4pt cortisol test ? Also what is your thyroid function ?...digestion does take a lot of blood flow..are you taking a digestive enzyme and or.are you on a systemic enzyme ?..just ideas ..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Carol in PA
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Member # 5338
posted
How did you feel first thing in the morning before you started the antibiotics? Is the way you feel now an improvement?
When I first got on the Internet, I joined a fibromyalgia board, as I obviously had all the symptoms.
One of those symptoms was that when you woke up, you felt like you had been hit by a truck. Omg, everything hurt, and I was in pain all day.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Jordana
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Member # 45305
posted
No, I've been like this all along, although on abx it's actually worse.
The only things I can think of are that digesting food is stimulating my vagus nerve and this makes Lyme mad; or there's some natural die off occurring every day that happens at a certain time of day; or since cortisol is lower then it makes me symptomatic.
And I mean going from feeling like hey, wow, maybe I don't even have Lyme at 9 AM to feeling like I'm about to die six hours later. Trembling, sore, spaced out, sometimes vertigo or tinnitus, weak all along my spine, sick.
Or -- it's a co-infection.
Posts: 2057 | From Florida | Registered: Feb 2015
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TNT
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posted
I would check when your meds peak in your bloodstream. I think it's called the T-max (under pharma-kinetics section). It sounds like it has more to do with the timing of your meds, though the mid-afternoon slump doesn't help anything.
It sounds to me like you are making progress. I remember when you started Mino you felt bad (and weak) all day long.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
I would suspect it is pretty much a 50/50 split.
Half can point to when they first wake up as the best part of the day, but then they tank as the day progresses.
Half struggle early in the day, only to improve as the day unfolds and it grows later.
Burrascano's sleep admonition is all well and good, but sleep is one of the early and persistent casualties of Lyme & Company for many.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Jordana
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Member # 45305
posted
Better...sigh.
Lol I would not say that.
But I'm pretty proud of myself for making it to 400 mgs. 400 has to be killing something. Now I just feel about as bad as I did before I was taking it.
So progress maybe. Of course I just woke up so I'm feeling hopeful.
Honestly I would sleep the day away. The only thing that gets me up and out of bed is that I have to get to my buhner and my meds and my binders on time.
Posts: 2057 | From Florida | Registered: Feb 2015
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Of course I just woke up so I'm feeling hopeful. 
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