LymeNet Flash: Finally- Clinically diagnosed with babesia! Advice?

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Finally- Clinically diagnosed with babesia! Advice?

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Topic: Finally- Clinically diagnosed with babesia! Advice?

merrygirl
Frequent Contributor (1K+ posts)
Member # 12041

posted

I went to see a new LLMD and he felt strongly that I probably have babesia. I am starting Mepron/Zith in 2 weeks. I was just looking for advice.

My llmd said I would likely herx 3 weeks into the meds. Is that accurate?

I am afraid to ask but What is a babs herx like? Is it worse than a Lyme herx ?
Any advice appreciated.

MElissa

Posts: 3905 | From USA | Registered: May 2007 | IP: Logged |

Parisa
LymeNet Contributor
Member # 10526

posted

Glad to hear you're going to be treated for babesia! My husband herxed pretty hard especially after the first week or so.

Posts: 984 | From San Diego | Registered: Nov 2006 | IP: Logged |

CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

posted

With Babs my experience has been that it can hit sooner, often on the 4th or 5th day of treatment, for me within a few hours of first med. For me I got dizziness, strange floaty feeling, top of head pain, flushing throughout body with greater feeling present in limbs than in years before treatment- I had numbness and peripehral neuropathy and what I thought was resiudal Lyme arthritis in my hands and residual Lyme brain fog but it was all Babs and went away pretty quickly. For me the symptoms went away within a few weeks but I could not go off Mepron wihtout them coming back, so I stayed on 2 years, the last year with Artemisia as well. I have a history of recurrent malaria however and this may explain some of my longevity in this regard, I have never met anyone on Mepron that long.

Remember to take Mepron with fat- it absorbs with it and if you don't take it with fat it will just pass through your system!!!

I am glad, I have personally been of the opinion that your kidney stuff may be due to Babs- so I am very glad to read this. I was JUST thinking of you last night and Babs actually, seriously, when someone was telling me re their babs stuff I was going in my head, "Darnit, that Merrygirl needs to get treated for Babs, she's a Babs-ian if I've ever seen one*)!" So I am very glad to read it.

VERY very sincerely,
Sarah
who is hoping this will improve
your kidney situatioN!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005 | IP: Logged |

merrygirl
Frequent Contributor (1K+ posts)
Member # 12041

posted

Thanks for the advice and kind words, it really helps.

Thanks for thinking of me Sarah, I appreciate that very much.

My new llmd is top notch [bow]

so we are finally on the right track (I hope). He was concerned about my kidneys and ordering some new tests to check on them. My kidney doc seemed to think that all is well since my blood tests on my kidneys are ok.

[shake]

My new llmd is also concerned that my C-reactive protein is really high and climbing. He said it wasnt a good sign. [confused]

I wish I had asked him what he meant, but I didn't.
and I was "complicated".

I am excited and anxious to start the new meds, but have to wait 10 more days.

Wish me luck.. I am sure I will have more Q's.

Melissa

Posts: 3905 | From USA | Registered: May 2007 | IP: Logged |

maureen2174
LymeNet Contributor
Member # 11471

posted

For me, I herxed within 3-4 days, then again every 3 weeks. I honestly almost cannot tell the difference between herxing and the generally crappy feeling i have. I have not felt good since being on this treatment at all. I am going into my 8th week of it soon.

Johnny- the zith is making me exhausted too. I keep on falling asleep when I put my 2 1/2 year old to bed in his room. Usually I am such a night owl, so this is strange. I take both my zith pills at night with dinner and then i am completely wiped out.

i am getting that spacey feeling a lot and hardly ever got that before. Also lots of leg pain and weakness, some knee pain. I am thinking the leg muscle pain and weakness is babesia. OH, and the nightsweats are awful, but I have heard that mepron can cause them so not sure if it is the babs or the meds.

Posts: 871 | From NJ | Registered: Mar 2007 | IP: Logged |

merrygirl
Frequent Contributor (1K+ posts)
Member # 12041

posted

Holey Moley!

These meds are expensive! [Eek!]

Luckily my insurance covered most of it, but my copay for the Mepron is $180 and copay for the Zith is $40! My husband is freaking out.

[Frown]

Posts: 3905 | From USA | Registered: May 2007 | IP: Logged |

adamm
Unregistered

posted

Hey MG, do you mind if I ask what your symptoms were.

IP: Logged |

merrygirl
Frequent Contributor (1K+ posts)
Member # 12041

posted

Fever (averages 100.5) everyday for 9 months now

Sweats, chills,enlarged spleen, tachycardia, palps

I believe these are the babs symptoms. I have other symptoms too but thinking they are Lyme.

Posts: 3905 | From USA | Registered: May 2007 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Thank the good Lord that you changed doctors!! I would hate to think what might have happened to you if you hadn't. [Frown]

Yes, you could herx within the first day or days. Then there's the 3-5 wk herx.

My babs herxes were way worse than any Lyme herx I've ever had.

Sorry to tell you that, but you need to know.

The fatigue you will likely experience will be from the babesia, not from the meds, so to speak.

Yes, it's a herx reaction....but it's because babesia causes intense or extreme fatigue.

I'm so glad you are going to be treated ASAP for the babs! If your money runs out, there ARE other options for treating babs.

[group hug]

Melissa

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

sixgoofykids
Moderator
Member # 11141

posted

I herxed every 24 days on babs treatment. I was treated from the very beginning of Lyme treatment, so they herxes were very bad ... an exaggeration of symptoms I already had.

I was on Mepron/Biaxin/Artemisia for about 9 months, then switched to Lariam, Malarone/Artemisia for three months. I no longer have any babs symptoms and am on Lariam for maintenance.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007 | IP: Logged |

merrygirl
Frequent Contributor (1K+ posts)
Member # 12041

posted

Lymetoo, I should have listened to you in the first place!

I am glad you are all honest with me.

Thanks again

Melissa

Posts: 3905 | From USA | Registered: May 2007 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I hope this is the beginning of GETTING WELL!!!! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

groovy2
Frequent Contributor (1K+ posts)
Member # 6304

posted

Hi All -

I did not herx till about 3 months into Babs
treatment -I was a little worried that I was not herxing and sure Wished I would herx--

I learned to be more careful what I wished for-

End of month 3 I herxed BigTime for
2 months solid -

Babs Herxs are Much Worse than herxs for lyme -
felt like l I had been run over by a SUV -

All of my symptoms got Much Worse and never
eased up for 2 months or so -
New Symptoms popped up too -

I was Lucky my LLMD said on my First visit -
-- YOU Have Babs Too ---
she was exactly right -

I am Very Luck I have a Good LLMD --

Then like the others have said -
the Herx got worse about every 3 weeks --

My tests came back - Negative Igenx -
both Lyme and Babs -

Now I have almost zero babs symptoms --
except I still herx a little about 3 week
apart --

One thing that Really helped me was to drink
3 to 5 gallons of warm tea Every Day -
(usually 5 gallons)

All of my Liver tests ect come back Perfect-

My LLMD is surprised that my test
come back so clean -

Drinking all of that tea is what did it -

Treating Babs can take Along time -
depending how long you have been sick and any
other co infections you have it can take
7 months to over 3 years --

Once you start Babs treatment it is
SUPER IMPORTANT NOT to STOP taking
your Babs medicine -even one day -

If you stop you will relapse Quickly and
you will LOOSE ALL the PROGRESS that you
have made so far --and then some more --

Your FIRST shot at treating Babs is your
Best Shot for Success - Dont waste it --

Stopping treatment causes Babs to become more resistant to meds -- Not good --

You can get Mepron for Free from

-- Bridges to Access -- google it

Its not hard to qualify -
you dont have to be completely broke ect -

I just called them to check and you do
have to live in the US -- OucH

For Me Babs cause Most of my problems --
I have had all of the symptoms but I did
not have Air Hunger to bad -
but I did have it alittle --

From what I have seen here on LN I think
that about 70% of folks have both
Lye and Babs -

Most people that have babs too
dont show much of progress till they
start Babs treatment Also --

Hope this helps -- Jay --

Posts: 2999 | From Austin tx USA | Registered: Oct 2004 | IP: Logged |

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