Topic: Can anyone tell the difference between Babesia fatigue and Lyme fatigue?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Just wondering to those of you who have noticed one type of fatigue got better from, say, Mepron....but another kind of fatigue stuck around.
Or if one aspect of fatigue got better with Lyme treatment, like IV Rocehpin, IM Bicillin, etc....but another kind of fatigue stuck around until you treated babesia.
Those kinds of ways of telling, or any other ways you have figured it out. I'm sure it varies person to person, but I will still be interested to hear this.
So many people just say "fatigue," but more specifics would help.
Here are some Types (let us know all that applied, or did not apply....to babesia or lyme):
1. Is it the kind where you seriously can just NOT stay awake? aka "sleepy," like if you laid down on a couch, you want to turn off lights and shut your eyes? (aka, uncontrollable desire to sleep) Any time of day, even if you got 12 hours of sleep night before. (and specify if babesia or lyme from your observation)
2. Once you're up, you aren't having a "sleepy" fatigue, where you want to close your eyes, but you just feel SOOO tired, like too physically tired to shower without resting before blow drying hair. Like everyday tasks are too exhausting for your stamina. (babesia or Lyme or bart? etc)
3. Regardless of what you're like during the day, NEEDING 10, 12, or 14 + hours of sleep (like you can't get out of bed even when someone shakes you...you just are too weak and drift back off the second they leave)
I can't think of too many more "types," so if you can, please add them....but I'll tell you a little about my fatigue. I used to be the first type, "sleepy," all the time. It was so bad, I could have never joined a site like this. I was always drifting in and out of sleep, and was always laying on the couch.
Now, I have the thing where I absolutely require at least 11 hours of sleep. Even with that, I don't feel good at all during the day. BUT at least I'm not sleepy, where I'm sprawled out on the couch drooling because I couldn't stay awake.
Too low of stamina/energy to shower. Whole body feels too weak to do that. But, I can do other things that require shorter bursts, like going upstairs to get something, making coffee, heating up a microwave meal....just no tasks that have a duration to them, like 15-20 min. (Is this Lyme or babs? I'd love to know because it would affect my treatment).
If anyone has any suggestions as to what these were for you...please let me know. I didn't mention Bart, or mycoplasma, but please mention them if you think they apply. Or any other condition.
I have tried treating adrenals...gives a slight boost but nothing much. My adrenal testing wasn't that off really.
I test positive for Lyme, babesia duncani, and used to test positive for bartonella henselae...not sure if it still is there.
Basically, most of my other babesia symptoms are going away, and I'm not responding much to the babesia drugs I'm taking (and I've tried Mepron, Malarone, Alinia, etc). So I'm wondering if I should try something new for babesia, or just give up on those meds, focusing on Lyme, which I know I still have.
People always say, "babesia causes fatigue," but I just wanna know a little more about what they mean by that. Maybe mine is just due to Lyme, which I know can be a beast.
Anyways, it would be nice if people would not just say, "all of the above can be any of the TBDs" and leave it at that. I'm just asking if people have noticed any trends in terms of what "fatigue" meant for them, and from which infections. Or, what drug helped that kind of fatigue.
My main goal is to try to figure out what direction I should go to treat mine...what kinds of drugs, etc.
Posts: 4590 | From Midwest | Registered: Jun 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have the wired but tired fatigue. It is deeply profound, I call it the "death fatigue" because it feels like I could die. On top of that, I can't sleep. I can feel like I am going to collapse on the floor, yet cannot go to sleep. I take sleep aids just to get 4 hours of sleep.
I think my fatigue is from Lyme. I haven't tested positive for Babesia. Only treated for it for 2 months. Not enough time to really say for sure. Leaning toward this fatigue being Lyme though. I can take a shower, dry my hair and then I have to rest before I can do something else. Some days are better than others.
I walked on my treadmill a few weeks ago because I had 2 good weeks in a row, walked 15 minutes and ended up laid up for 8 straight days. This was several weeks ago and I still don't feel as good as I did before that. I won't make that mistake again!
I talked to my doc about Mycoplasma, but he seems to think I have treated with antibiotics long enough to have gotten rid of Myco. He thinks that when you don't improve it is either Lyme or Babs. The 2 hardest to get rid of in most ppl.
As far as my fatigue, me and my doc are leaning toward Lyme.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks for responding! My current LLMD is leaning towards Lyme for me too.
I also have a very hard time getting to sleep at night, and feel wired, but I eventually do get to sleep (around like 4 or 5 AM!) and once I do.....I sleep for at least 10 hours.
I would LOVE to correct my sleep schedule, but it has been so difficult. It seems like it's a force greater than me and my discipline.
The problem is, that I was having some babesia night sweats, so my LLMD's PA put me on babesia treatment. And I just really am getting the sense that maybe it's not the right way to go, and I should be focusing every ounce of my strength towards recovering from Lyme (because the babesia meds themselves affect me negatively).
So I kind of want to drop the babs meds. I feel like they aren't the answer.
And everyone keeps saying, "Fatigue is babesia"....but I think that would be a dangerous assumption for me to make, and I could end up wasting a lot of time. I've already wasted a lot of time trying to treat babesia, unsuccessfully.
Thanks for the input!
Posts: 4590 | From Midwest | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
There's just too much guessing with these LLMDs treating isolated symptoms. With a negative Babesia test, I'm sure WebMD could come up with 8,000 diseases that involve sweats. It's a tough road, but these docs need to be pretty sure before encouraging a patient to drop thousands treating Babesia. It just rings wrong with me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Other reasons to consider for fatigue, thyroid issues, estrogen dominance, anemia.
If I had to vote on one of the bacteria's, I'd vote Lyme, since I dont' have Babs and have narcolepsy-like-fatigue at times.
Methyl b12 shots help over time and are cumalitive, of course when other causes are ruled out.
posted
I'm being treated for babs and lyme. Been on Mepron, Malarone, Flagyl, and Biaxin, along with other meds for my lyme. I had the 2nd and 3rd type of fatigue that you mentioned, where I got up and was very sleepy for most of the day. I felt like I needed a nap after being up for an hour or two.
Bactrim DS was the thing that made me turn the corner with my fatigue. Once I started taking that, along with my Mepron and Biaxin, I began to have energy again. I told my doc that it almost wired me and counterracted the sleepiness that is often a side effect with babs treatment... Also went to a holistic doctor that is treating me with thyroid meds, testosterone cream, and a low dose of hydrocortisone, after finding that these levels were all low.
-------------------- Shelly Posts: 73 | From New Jersey | Registered: Apr 2009
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CherylSue
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Member # 13077
posted
Dr. H from CA says that babesia and lyme can be treated at the same time. I think I read that from one of his slide presentations or saw it from his video presentation to LIA. He treats both at once.
I am taking malarone and ceftin and nystatin and methylcobalamin B12 shots. I work full time.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks everyone for taking the time to respond to my (overly long) post!!!
And thank you ((((dilly))))....hugs to you and your son.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Cass A
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Member # 11134
posted
Dear Hoosiers,
This is the type of question I'd really like an answer to, also!!
Through Babesia treatment, I seem to have kicked the all-the-time fatigue mostly.
I still HAVE to get a nap of 1-2 hours every day. I blank out, and it gets worse the longer I try to fight it.
I can go hiking, biking, etc., but need my rest afterward!
Can't hold a 9-5 job.
My LLMD gave me some adrenals meds and some anti-Lyme herbs, but I'm waiting until I'm done with the Allergie-Immun drops to start up anything long-term.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
For me, Babesiosis causes worse fatigue than Lyme. I have treated it more than once, and when I am done with treatment the fatigue is always better (although not eliminated).
When I am treating Babesiosis, I need much more sleep at night, and I do have sleepiness during the day sometimes.
I have exercised throughout treatment, but I cannot do any kind of cardio exercise when I am treating Babesiosis. For me, lack of stamina and body weakness is from Babesiosis.
I hope you can figure this out Hoosiers51. It is not easy!
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Based on what you said, Babesia is my issue then!
quote:Originally posted by Sammi: For me, Babesiosis causes worse fatigue than Lyme. I have treated it more than once, and when I am done with treatment the fatigue is always better (although not eliminated).
When I am treating Babesiosis, I need much more sleep at night, and I do have sleepiness during the day sometimes.
I have exercised throughout treatment, but I cannot do any kind of cardio exercise when I am treating Babesiosis. For me, lack of stamina and body weakness is from Babesiosis.
I hope you can figure this out Hoosiers51. It is not easy!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I tested positive for lyme, but negetive for babs. I know that test isn't 100%, but, I am going with what I have.
My fatigue is my major problem. I am so tired that when the alarm clock goes off, I want to cry. If I did not have a child, I probably wouldn't get out of bed much. I do little bursts of activity, and then sit for 30 minutes.
My fatigue is so bad that even the crafts I love to do and I could sit on the couch and do, I just can't gumption up enough energy to do. I can only do the bare minimum.
I put a load of clothes in, I sit down and wait until they are done. I get up and move them to the dryer. If I vaccum I do one room, I normally leave the vaccum out in that room.
I thank god every night when I go to bed, and that is the happiest time in my life. Then, the morning comes way to fast because I never feel rested.
I have mental and physical fatigue that has not gotten any better with lyme treatment. I do have ehrlichia. HME.
I have ever tried the stimulants, provigil, nuvogil, and adderall. They make my heart race, but still I feel drained.
Don't know if that helps your or not. I wish I had a magic bullet for the fatigue. My thyroid, adrenals and hormones have been checked. Supposedly all normal. By the way, I hate that word, normal....
Good luck, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
seekhelp, I agree that it sounds like you have Babesiosis.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
NeedLotsofHelp,
You said, "I have ever tried the stimulants, provigil, nuvogil, and adderall. They make my heart race, but still I feel drained."
I feel like that too when I take those!
It's like, yes, I'm stimulated....(hence, stimulant)...but it doesn't really take away the overall feeling of just being "drained."
You described it well...my life really is very limited by not having the energy to do hardly anything, even around the house. Everything is a huge struggle, and I feel very drained.
(my cognitive has gotten a ton better though, probably from Bactrim...so I'm moreso dealing with physically not having the energy to do things, even initiate anything).
Like with CFS, they say you get tired after an activity...I don't even have the energy to START an activity.
So I wonder if the drained feeling could be Lyme, but then lack of stamina could be babs? Just speculating here.
Thanks for all the responses. I do test negative for EBV now, and all viruses tested, thanks probably to taking L-Lysine and avoiding overdoing arginine-rich foods. I test positive for mycoplasma pneumoniae though.
I'm taking bio-identical Progesterone to combat "estrogen-dominance."
Hopefully we'll keep getting some more responses here!
Posts: 4590 | From Midwest | Registered: Jun 2008
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It just rings wrong with me.
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