posted
One symptom associated with Babesia is this strange dizziness. A great description of it can be found on a Babesia symptoms list as:
-Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
This "dizziness" is not like normal dizziness associated with Lyme and does not come and go. It's constant and 24/7. Those of you with Babesia that have this know what I'm talking about.
I'm just curious if anyone has had this and successfully eradicated it with Babs treatment. It's the worst feeling in the world I couldn't imagine a symptom being worse. If you had luck getting rid of it, how long did it take for Mepron or your treatment to get rid of it??
Posts: 306 | From NY | Registered: Sep 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
VERY common. VERY annoying. And can be very severe.
Yes, it goes away with treatment. Each person is different. No set time for it to go away, I'm afraid. Might get worse during a herx.
posted
Yes ,I had that. It was the first real sign that it was something besides aches and pains. I knew at that point I needed to go to the next step to get a diagnosis. It is gone. It took about three months of treatment.
Posts: 342 | From northern california | Registered: Dec 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, I have it. Can't walk through large stores due to it. Scary feeling.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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@seekhelp funny you mentioned large stores I've been having the same experience!
Posts: 133 | From Philly/NJ | Registered: Nov 2009
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Jamers
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posted
That was my first and recurring symptom. I feel like Im rocking while sitting on the couch. It gets worse occasionally, lately due to starting Bactrim DS. Is this Babs? I was told no coinfections, maybe Bart.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Hubby agrees with the description -- he used to tell me that it was like trying to walk in waist deep water at the beach.
This symptom improved for several years after he treated babs with quinine and clindamycin and then used some primaquine and chloroquine and took bactrim for a year. But even then it never went totally away. Recently has become much worse again. So we are back to treating babs with some new and different drug combos.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Jamers
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posted
Lymetoo---How do you take artemisinin? Do you start at low dosage then work up? I'm on zith so adding this might be the key.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I had it too. It was exactly as described - like walking off a mountain top into the clouds. I also felt dizzy with vertigo and tipsy when I walked, like a drunk.
After nearly 7 weeks of Mepron most of that is gone. I still get vertigo when I change the position of my head.
I took artemisinin with Bactrim DS and got worse. The LLMD told me Bactrim is not effective against babs and because I used artemisinin with Bactrim, the babs is probably resistant to the artemisisn now so not to bother with it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I had it badly. I remember going to the Indianapolis 500 when I was really sick (yeah, I got out of bed for it, tough day). I took an umbrella with me because they were calling for rain, but even more so because everyone else was carrying coolers, etc. to the track and I could use it as a cane to keep my balance.
After the race it was raining so I had to use that umbrella. I was walking like I had been drinking all day .... I could not walk straight at all.
At home I was always okay because there are things to hold onto, but whenever I was gone from the house, someone had to help me walk.
I did completely eliminate this issue and all other babesia symptoms (except for anemia, but I also have low HCL and heavy periods that cause anemia as well). I was on Mepron/Malarone for 20 months, the changed over to an alternative treatment (Bionic 880). It took another 9 months to get rid of the babs after Mepron, so a total of 29 months. I don't remember at what point the dizziness went away .... several months into treatment, like maybe 9.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
As we speak, I am struggling with this disabling symptom! I am so scared to go anywhere and do anything because I feel like I am weak at the knees and that I am on a swaying ship! I attempted to go to a casino the other day and I thought I was going to pass out or cause a scene--luckily, I am so used to this horrible symptom after a year and a half and I know how to "survive" in large crowds. I haven't got to treating the Babesia yet because I also have Bartonella and chronic lyme, so I am still struggling with this strange dizziness. I can absolutely relate, because it is not the typical kind of dizziness--and try explaining it to doctors, FORGET IT!! they just don't get it! Posts: 18 | From Connecticut | Registered: Nov 2010
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posted
The only way to explain it really is like an altered reality, the "walking off the top of a mountain onto a cloud" is a good description too.
I'm on my 10th day of Mepron/Zith/Artemisinin no improvement yet but I'm sure I have to give it a lot of time.
Posts: 306 | From NY | Registered: Sep 2010
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posted
I started Mepron a few months ago, as directed by a primary care doctor. I was on it for about two weeks and I started breaking out in itchy hives and was getting nausea. At that point in time I wasn't seeing an LLMD and my primary care doctor told me to go see an infectious disease MD--Bad idea! She told me I was allergic to the Mepron and to stop it immediately. My LLMD thinks it was just a herx and he's going to put me on it again to see if it was in fact a herx and not an allergic reaction.
Posts: 18 | From Connecticut | Registered: Nov 2010
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Jamers
Frequent Contributor (1K+ posts)
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posted
Kalynn- Hives = allergy PERIOD. Your doctor should definately know this!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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seekhelp
Frequent Contributor (5K+ posts)
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posted
That's a scary LLMD who can't recognize that. RUN!!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Mepron is known to cause a rash in some people. The first time hubby tried it 7 years ago he also got the hives after 10 days. He went from a couple of hives to having them all over in 24 hours. They turned into big whelts and he was beet red all over. He gained 10 pounds of fluid weight over night. His skin ended up peeling off on his ears and nose and fingertips.
We were never 100% positive if it was an allergy or a herx.
Since hubby has treated with many other antimalaria meds and recently tested with a high titer for babesia duncani (WA1) we decided to take a calculated risk.
Instead of using mepron (750 mg per teaspoon) hubby is trying malarone (250 mg per pill). He took 1 pill every other day for a week. The 2nd week he took one pill daily. Today is the 3rd week -- he will increase to 2 pills daily. So far he is having herx reactions -- mild sweats, some chills, decreased cough, slight improvement in headaches -- but no allergy symptoms.
But it may be too early yet since the dose is lower.
Malarone might be a better option than mepron if you try again.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I bought magnesium oil spray from swanson and first time aplyed to my hends got hives same as in allergy.
I know at that time i have to wait for some days and try it again further from heart and head so i tryed just abow ancles on my feet without problem and after a week 3 time the previous dose in the same spot without a problem and still use it every day.
If it was allergy next time the reaction wold be really bed and some time life threatening.
It is well known that people with low immunity or immunity not functioning well have this reactions that just lately is found that vitamin D helps resolve the hives.
Posts: 482 | From Nebraska | Registered: Feb 2010
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posted
Maradona, that is interesting. I've started mepron and it is helping me a lot but I have gotten very mildly swollen eyes, fingers, and slight wheezing. Yes this is probably an allergy but I am allergic to way too many things. I really want to stay on Mepron and am hoping that this allergy will go away?
Posts: 641 | From Nevada | Registered: May 2009
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