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Post Treatment Lyme Disease Syndrome

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Posted 12/14/2019 7:13 PM (GMT 0)
There has been a lot of talk about Post Treatment Lyme Disease Syndrome lately. In the event that a patient has actually thoroughly irradicated the disease, (which I think is rare in most instances), and they are still sick, I wonder if this illness could actually be Chronic Fatigue Syndrome. Perhaps the damage to the body from fighting off Lyme Disease and dealing with the poison injected into the body via antibiotics is so great that the body is always functioning at 50% compacity from that point forward due to extensive cellular damage.

I started to wonder about this after I watched this video about CFS:

https://www.youtube.com/watch?v=hRdn4A2SGic
Posted 12/15/2019 12:50 AM (GMT 0)
This is where my mind is right now; Post Lyme, Post Viral, Chronic Fatigue...my symptoms fit for any of them. I think they are all the same, or very similar. Check out the CDC web page on Chronic Fatigue. Headache, brain fog, muscle and joint pain, cardiac issues are all listed as symptoms. Seems like various infections including Lyme can cause these issues. I don't see any difference between a doctor telling me I have CFS or Post Lyme.
Posted 12/15/2019 2:42 AM (GMT 0)
Well - I don’t have chronic fatigue - so what do I have then?
Posted 12/15/2019 4:43 AM (GMT 0)
Your lucky girlie, I had to take lunch car naps and drink redbull daily to stay awake for work.

A lot of that was adrenals, as keeping my thyroid in tune did not help much back then.

Chronic Fatigue Syndrome is just another lable like fibro, but a little different. They call it ME now. CFS is old school.

The ME'ers on Pheonix Rising forum get somewhat scientific like here vs the fibro group who don't really venture outside the box that western medicine put them in "I like the Rx better than that one" ect.
Posted 12/15/2019 4:59 AM (GMT 0)
“Your lucky girlie,”

Well I don’t feel lucky - while I don’t have (never had) fatigue, I make up for it in pain.

I guess some have both - that would be horrid
Posted 12/15/2019 5:14 AM (GMT 0)
My fatigue has been unabated (this time) for over six years. I've had several other rounds of fatigue, though, in the decade prior. Following my tick bite, five years ago, I had migrating muscle and joint pain for a few years. Thankfully, those types of pain are mostly gone. Any pains I now have I assume are just my getting older. smile

Girlie...

* Is your pain constant? Or, does it cycle?
* Is it in specific areas? Or, does it migrate?
* Is it sharp or dull?
* Does anything make the pain better or worse? (i.e. movements, weather, food, etc.)

I can't imagine dealing with constant pain. Unrelenting fatigue is enough. If I had to choose between the two, I might well have to stick with fatigue. As the saying goes: "Better the devil you know than the devil you don't."
Posted 12/15/2019 5:14 AM (GMT 0)
Had Both yes.

I never liked all the zombie shows on Cable TV- reminds me of my past.
Posted 12/15/2019 5:06 PM (GMT 0)
Holding back on the 'quote' feature:


"Girlie...

* Is your pain constant? Or, does it cycle? Not quite constant. I have good days - about 3 per week on average. A few patterns with herxing but generally random.
* Is it in specific areas? Or, does it migrate? always upper left side of back, left arm and hand
* Is it sharp or dull? gnawing, sometimes burning
* Does anything make the pain better or worse? (i.e. movements, weather, food, etc.) sometimes related to treatment - ie herxing it is hell

I can't imagine dealing with constant pain. Unrelenting fatigue is enough. If I had to choose between the two, I might well have to stick with fatigue. As the saying goes: "Better the devil you know than the devil you don't."
Posted 12/15/2019 7:01 PM (GMT 0)
I don't buy "symptom diagnosis's" like "chronic fatigue syndrome" or "fibromyalgia." Nothing more irritating than going to a doctor to be told you're suffering from a symptom!

What I will say, the first time I was dx'd and treated aggressively for 6 mos, I only had a good year or so before I started having symptoms again. They weren't a full on flare but bothersome nonetheless and then I developed stomach trouble that put me down.

"Post lyme", "chronic Lyme,"... whatever you want to call it, all i say to doctors, figure it out so we can get better!
Posted 12/15/2019 11:55 PM (GMT 0)
Well, I think Lyme manifests itself in many different ways. I don't think it will always manifest as CFS, but perhaps this is one of the things it can manifest as.

Astro, I take naps in my car at lunch as well. It's the only way I can function.
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