Avatar universal


I would like to ask Jackie what treatment you received for babesia. I was diagnosed with babesia 6 weeks ago. I have been cleared  of my lyme and rocky mountain spotted fever.  How long did it take you to recover from babesia? Many have said you don't recover from it.  I know you have stated you are in remission.  Then I noticed today that you also had babesia. Whatever you can tell me about it will be appreciated. I am still very sick.  Thanks
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Avatar universal
I was diagnosed with Lyme and babesiosis at the same time.  The doc treated me first with oral antibiotics against babesia, and then when that was done (I don't remember exactly how long it took, but less than ~6 months I think), then I was treated for Lyme, also with oral antibiotics.  The Lyme treatment took maybe a bit longer, like 8 months or so?  It was about ten years ago, and memory fades.

btw I'm not in remission:  I am entirely well about 9 years out, with clear tests and no problems, symptoms or recurrences at all.  Same is true of someone else in my family who was treated at the same time for the same infections.

I was kind of worn out for maybe another six months after the meds were finished, but the recovery is so gradual as the body rebuilds that it's hard to say how long recovery took.  I have thought that those who have continued symptoms after treatment is done may simply have not been properly diagnosed and/or fully treated because docs are trained that bacteria all run on the same treatment schedule.

The docs who don't *really* understand Lyme strike me as going by the book, and when 'X' months of antibiotics are finished, then the patient is therefore Officially Cured with a capital C no matter how lousy they feel.  Lyme reproduces verrrry slowly compared to most other bacteria, so the opportunities for the human immune system to breach the cell wall and wipe out the Lyme bacteria are relatively far apart, compared to most other bacterial infections.  My treatment for each infection (first babesia, then Lyme) took about a total of nine months of antibiotics, first one and then the other, then another 6 months or more to gradually be my old self again.

Docs and patients both are accustomed to a couple weeks of abx for other ailments, and then you're good to go ... but Lyme just doesn't play that way, and needing different meds for each infection ~doubles the treatment time.  One thing that really bugs me is the term 'post-Lyme syndrome' -- when the treatment is officially stopped because the calendar says so, but the patient continues to have symptoms.  I can understand fatigue etc., but when someone still has the same Lyme etc. symptoms as before treatment ... I'd want to know if treatment was long enough and with the right meds.  Non-LLMD docs have, it seems to me, been treating Lyme like a regular old bacterial infection instead of the behemoth that it is.

This is a long way to say ... each treatment runs on its own time schedule, and each infection does the same.  There has been a good deal of confusion about Lyme in assuming all bacteria operate at the same speed, but it just ain't so.  Then the final insult is to tell an inadequately treated patient that s/he has 'post-Lyme syndrome' with symptoms that aren't realllllly still Lyme but just feel that way ... well, that just doesn't wash, but it's where much of so-called mainstream medicine was when my family voyaged through Lyme and babesis.  I hope the situation has improved by now.

End of rant.  If there's anything useful I can convey, let me know.  Take care!
Helpful - 0
Thanks for clearing up that you are well and not in remission.  I have heard so much about when you have babesia you just can't get rid of it.  My doctor started treating me 6 weeks ago for the babesia and I have gotten so very sick again.  I called, and they have me coming back in Tuesday.  I hope they can adjust something, and get me feeling better again.  
Avatar universal
I had a message ready to send you, but hit the wrong key or something.  Ooops.  But if you see some fragment of a message ... it was me.  (I'm not a fan of this new page format.  Can you tell?!  Ha.)

The message was to say hang on, and consider getting a quiet second opinion from a different MD at some point if you think another view of the whole history and situation may be helpful.  You've been through a lot already, so that makes clear you are strong and resolved to beating the bugz.  You can do it -- sending you all good wishes -- and please keep us posted.  We'll be here by the campfire -- J.
Helpful - 0
I don't like this new format either.  My husband and I have been talking about what we would do if this doesn't work.  It bothers me that you say your medication did not make you sicker.  In the last 6 weeks I have been in bed for about 2 and a half weeks.  The problem is finding someone to treat me with the meds you took.  I have read about several others that said that they took what you took, but many of them were not as lucky as you, they got sicker too.  I am tired and want to get well soon.
Avatar universal
I just now looked back at my notes, and my treatment for babesiosis was two antibiotics at the same time:  
                           Mepron and Zithromax.
I had no problems with them at all, and I tend to be fairly sensitive to meds etc.  Hope that helps!  
Helpful - 0
Thanks, I had looked back on an old post of yours and found it. I would like to try it.
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