posted
I went to the dr 10 days ago, 2 hours away, slept the whole way home then all afternoon, then slept 12 hours that night. The next day I napped.
Yesterday, went to baseball game. Slept 14 hours, woke up for 1 hr, slept for 4 more, woke up now and got on the computer to do something really quick, then back to bed.
I start Lyme meds tomorrow.
My question, Can Lyme alone cause this bad of post external malaise?
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I've wondered too how much fatigue is Lyme-realted.
I was just diagnosed last month, after suffering for 9 months with all sorts of odd symptoms, among them fatigue.
My fatigue was so bad last summer that I'd literally crash out on teh couch for 3 hours in the afternoon while my younger son slept and my older son watched videos.
It let up for a while (never totally went away), and now that I've been on abx for almost a month, I have been really wiped out for the past few days.
Sometimes I feel like the floor is trying to suk me down, that's how bad it is.
I hope the abx help you and you're feeling better soon!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I believe chronic fatigue-like symptoms, esp. post exertional malaise, is rarely attributed to just lyme or even mainly lyme. After seeing a dozen CFS docs, LLMDs, and a wide range of energetic practitioners, it seems that ultimately CFS with or without lyme involves a complex array of bugs & toxins & immune dysfunction that allows this spiral to continue. I've taken antivirals, antibiotics, done various alternative protocols and I'm still a ways away from recovery although I would say the lyme cases where the core of their illness is lyme & co-infections seemed to respond faster to bionic treatment.
I think ultimately it's foolhardy to suggest CFS is always lyme just because it doesn't resolve from traditional CFS treatments, but lyme and other tick borne infections are likely a huge piece of the puzzle.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
there is a difference between fatigue and having postexertional malaise, which is having flu-like symptoms post any exertion above your "energy envelope" that may be delayed 24-48 hrs. This is a hallmark of chronic fatigue syndrome (for lack of a better name). In fact, the two-day exercise stress test may become the first objective evidence of defending a CFS disability case.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I think there is no simple fix for fatigue-as of yet-in chronic fatigue cases w/ or w/o lyme. If you are a primarily infectious case, you need to go after infections. If gut dysfunction, fix that--I know of a woman that eliminated her PEM by fixing methylation and fixing gut dysfunction. If you have genetically-predetermined detoxification impairment identified by an energetic practitioner or the genovations detoxigenomic profile, fixing that and focusing on binding and chelation need to be a priority. I haven't heard of anyone getting better just from supplementing glutathione, but fixing the methylation cycle may be imperative to give yourself a chance--and boost glutathione naturally. In a nutshell, I'm choosing to go after the infections, boosting normal flora and fixing gut dysfunction with progurt, and making sure I'm detoxing well.
This is complex as all hell, but I've been researching from the day I first got diagnosed with CFS and haven't stopped since. We all reap what we sow.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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I wanted to mention I've never had a string of sleeping that much since i got sick. Postexertional malaise doesn't necessarily mean sleeping all day in bed for the next 24-48 hrs. Do you just feel tired or did you feel an exacerbation of your usual symptoms for the next 2 days? Big diff
Posts: 713 | From Los Angeles | Registered: Oct 2007
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posted
I have had extreme fatigue for years. I'm just a completely zoned out Zombie all day and I feel like I will pass out constantly.
I improved after getting diagnosed with Sleep apnea and getting a CPAP machine to sleep with but it only helped alot at first. now I;m back to being exhausted. I don't know if its the Lyme, the Bart or the Rocky mountain. I have them all!
Posts: 29 | From New York | Registered: Apr 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
When I was really sick, I could sleep for up to 20 hours a day. I don't think it was post-exertional.
I think a blood parasitic disease like babesia (or a similar unknown parasite) could possibly be to blame.
I also think Lyme could be a factor in the fatigue, though I'm not sure.
I also think hypercoagulation due to one of the above infections could be a factor. Wobenzym, in very high doses, helps some.
If you read up on some parasitic diseases (note: I'm not speaking of gut parasites, I'm speaking of blood-born parasites), some people just sleep and sleep.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I can only speak for myself on this one but I had chronic fatigue which meant I had to nap every day in the late afternoon for about 2 hours. Horrible life draining thing.
I had it at the beginning of my illness 2 and a half years ago and I got rid of it along with deep de-personalization with 2 months of hard herxing on Cipro.
I stopped the quinalones for a few months and just did doxy. Within 4 months these symptoms returned.
Again added Levaquin this time and herxed like a mofo and those two symptoms disappeared and have not returned.
For me it seems to look like a Bart symptom but we actually do not know for sure. Levaquin is a good intra cellular drug for lyme too so it may be the lyme load was knocked down.
Just my experience with this symptom. I dont plan to let my foot off the gas again. Got a bit cocky this time last year and I am only getting a handle back on things now. I wont be caught napping again.....pun intended!!
I started back on Levaquin today. To steady the ship again. I felt I lost a little ground on the Bactrim + Zithro over the last 3 months in some areas.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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blaze
Unregistered
posted
In my case, Lyme had some help. I no longer blame the fatigue on Lyme alone...
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