seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am curious how many of you officially put Babesia into remission with your treatment. If so, can you let me know which symptoms were eradicated (i.e., stiff neck, fatigue, breathing issues, etc.).
I'm just trying to get a better perspective on what the outcomes may be.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Well...I can't say for certain that I have completely eradicated Babs because some symptoms do make an appearance every now and again.
But...the main symptoms that left for me were:
sleep sweats foot cramping unexplained bruising splitting headaches sore neck and shoulders loss of appetite asthma extreme fatigue
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, that's a nice list to get rid of (at least mostly).
What makes me question my Babesia Dx is I never have headaches. It seems to common. I wonder if my LLMD is making the wrong conclusion.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I never had headaches, but tested VERY positive for babs.
Posts: 561 | From eastcoast | Registered: Aug 2006
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DebAz
Unregistered
posted
FOr me too that list hit home
The feet cramps used to be so bad and the sweats and the bruising and more
and now I still have some neck and headaches.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Would anyone say Babesia was the #1 reason they experienced severe heaviness in their legs?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Leg symptoms seem to be tied to babesia....for example, when I was having a babesia herx, my legs would get so sore it was hard to walk more than a block, but that was very uncommon for me.
I would describe it as a weakness where the muscles just wanted to collapse. But I could see that "heaviness" would fall in that category, because in a weird way they did feel very heavy, like they didn't want to keep moving.
Granted, it could have been other things, but I believe it was babesia, especially based on what I have heard from others.
Also, I read about you being concerned about your Mepron dose....I know that the 1 tsp X 2 per day has helped some people. My doc believes it is an adequate dose in his clinical experience. I'm not sure what percentage of those people weighed what the drug companies usually consider to be the "average" of 150 lbs. So if you weigh more than 200 lbs, I would use that as rationale with your doc to increase the dose, just based on logic.
Also, check the research on the beta blocker propranolol and malaria....they found it helps people get over malaria. Maybe if you print the research your doctor would be willing to put you on a beta blocker. They are pretty safe drugs. Maybe it would help you get over it faster....who knows.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I think it is hard to seperate the symptoms; I sometimes try just to be in control of the situation.
For me the sweats, thought to be a tell of Babesia, resolved as soon as I started the Doxycycline. When a FISH test showed Babesia, the Meprone/Azithromyicin combo was started. While on it, the low red blood count and low hematocrit levels normalized. Also, the neck was less stiff, but the headaches were a constant - every 10-12 days I had a headspliter without fail.
Doc tells me pain in the rib cage is Babesia-related also.
Hope this helps.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I haven't gotten rid of babs yet but I have had some major symptom changes so I thought I would mention it.
I can sweat now. For many years I could not sweat. I also had severe heat intolerance. For years I could not tolerate normal room temperatures. I needed the house to be around 65 degrees at the highest. I would get really hot and my blood pressure would drop and I couldn't stand if I was in what most people consider normal temperatures. I would also be sick for days afterward. Some of these are typical CFIDS symptoms.
Now, people can come to my house and not wear a coat in order to be comfortable. I can also go out in the summer and not suffer terribly. My son in law couldn't believe the difference when they came for Thanksgiving dinner. To me it feels the same as it did when my house was 65 degrees.
I have been tested to have a low blood volume caused by a low red blood cell mass. I think this is part of orthostatic hypotension problem that I've had and that some others with CFIDS have.
Babesia affects red blood cells. Red blood cells affect oxygen. I think this is one reason why people with babesia feel so tired. Lack of oxygen. I did have better stamina after treatment but we are just trying to keep babs at bay now while we treat bart and my stamina has declined a bit since we ended treatment.
I'll be going back on babs treatment when we are done with bart. Can't wait to see if the fatigue lifts because it is one of my worst symptoms.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Positive for babesia WA-1, now called babesia Duncani.
On the plus side, I no longer have:
skull-crushing daily headaches falling asleep repeatedly throughout the day freezing all the time (chills)
Regrettably, I do still have:
Memory of a petunia inability to do two things at once (multi-process) hyperacusis (easily startled)
It's hard to really differentiate which things are lyme-induced vs. babesia-induced. Also I have numerous brain lesions which did not resolve with extended abx treatment, and began treatment very late, after being undiagnosed for nearly two years. So hopefully most people will get a faster start on it than I did.
I would say quality of life is a million times better after treatment. I used to think if I could just get rid of the vicious headaches, life would be grand. And indeed it IS! Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I see some of you here list foot cramps as a babesia symptom!
Are you sure they are babs-related?
Also, I have heard tinnitus / ear problems can be babs-related.
Does anyone here have a complete list of babs symptoms?
Seems hard to get hold of, I have seen the "short" one, but lots of symptoms seem to be missing there.
Posts: 347 | From sweden | Registered: Feb 2008
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
Thanks to everyone who contributed to this post, it was particularly informative to me.
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I agree, Swedish. When I read about babs symptoms I think there are many missing symptoms.
I have the following I attribute to babesiosis:
falling down suddenly (eyes roll back just before I hit the floor) leg heaviness and soreness toe twitching splitting headache forgetting to breathe "holes" in my lungs when I breathe (I tell my husband I feel like I'm breathing menthol) inability to breathe deeply sore ribs sore chest cotton head ringing ears dizziness neck ache sudden inability to move gagging gibberish and spaciness chills facial flushing tremors sore breasts (I'm a girl!) sore rash with pinpoint red dots
These are a few I can think of for just myself. I am currently aggressively treating babesia.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
"I'm not myself" was for me a clear babesia symptom. I kept crying for no reason.
Gone after babesia was gone.
Extreme fatigue, air hunger, night sweats, daily facial hot flashes with fatigue. Gone.
somehow the worst brain fog I ever had was also with babesia. Total fog.
And low ferritin causes fatigue, never had low ferritin again once babesia left me.
Another one is light sensitivity. I believe it was for me caused by babesia. Sun light caused me fatigue or very bad feeling, i couldn't stand more than 5 minutes under the sun. Gone with babesia.
I got babesia twice, that's why I can say my light sensitivity was a babesial symptom.
Posts: 6200 | From Brussels | Registered: Oct 2007
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I have given up on which infection is causing what, many overlapping symptoms etc. (I am also + Lyme, Bart, Ehrlichia and Mycoplasma).
I am treating Babs VERY aggressively right now. Mepron 2 tsp. 2x daily (my weight is 115 lbs), also on Malarone as well. I'm on Plaquenil and Biaxin as far as abx right now (note, not Zithro right now). I was on Mepron 6 months ago for apprx 4 months, took 1 tsp 2x daily, didn't see any improvement.
Anyway I've been on this dosage for apprx 6 weeks, I have seen improvement in neck pain (finally!), still have off and on leg heaviness, cranial nerve symptoms still there, internal vibrations and tremors have slightly improved. I would love to get my racing heart and arrythmias under control, not much progress yet. Still have air hunger - off and on. I have never had headaches.
Also, used to have drenching nightsweats before diagnosis, they sort of settled down on their own. Just had a HORRIBLE drench a couple of nights ago, been a couple years since I've had that...herx? Though I think I've read that Babs die off does not induce herxing, (protazoa vs. bacteria thing). Anybody know? Maybe something is dying off, sure hope so. Sick and tired of being sick and tired! TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Currently on mepron 2tsp x 2, plaquenil, zith and artemasia pulsed.
Have these symptoms:
cranial nerve symptoms (lyme or babs? don't know but i get droopy face on babs treatment! Spec. the eyes get droopy. crawling on the head heart arrythmias moving toes feet twitching feet cramps drenching sweats on and off ringing ears dizziness/ sense of being "not here" crawling in the nose severe facial twitching sun sensitivity fatigue
Recently added Bactrim DS which caused a herx I thought I would die from......had to stop it.....will go on it later on alone.
Posts: 347 | From sweden | Registered: Feb 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am not sure that I beat babesia, but I have either knocked it down alot or cowed it into submission!
These symptoms improved from mepron/zith treatment: sleep; anxiety; dizziness; energy level; breathing.
But, part of the time the treatment itself made me feel very tired and not great. So I could see the improvement best after I stopped the mepron and zith. Then it became clear to me how much better I was for enduring babs treatment.
[ 02-05-2009, 08:33 AM: Message edited by: Vermont_Lymie ]
Posts: 2557 | From home | Registered: Aug 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Vermont Lymie, you give me hope. I feel so awful during treatment that I'm very depressed. I'm just praying it will be worth it in the end.
I thought of some more symptoms I suffer with.
I, too, have a droopy, twisty face with babesiosis treatment. I am exhausted and sometimes get the feeling I'm "not here". I am very listless and have accomplished absolutely nothing the last few weeks.
I just want to crawl into a hole and die. I've isolated myself from friends and family because I'm tired of collapsing in front of them. I'm tired of trying to smile when it's so much effort.
So, I stay home. I guess I'm feeling pretty darn sorry for myself!
Hoping it will all get better - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
My daughter's air hunger, heart palps, chills and night sweats went away with 22 months of mepron/zith treatment.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Night Sweats & Breathing Difficulties. That's what I've noticed so far.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I believe I recently beat Babesia and have stopped my Babs med. It is my first and only success in my Lyme battle of 5 1/2 years, and it happened just a few short months after switching from years of Mepron over to Malarone.
No more night sweats, no more FEVER, that right there is how I knew. I've had a fever for about 3 or more years. Now I am back to my normal subnormal temperature. I was shocked when I saw that.
No more shortness of breath. I still have some of the other symptoms mentioned but attribute them to babs, Lyme, or small fiber neuropathy.
For me, the sudden leaving of the temperature was a sure sign that Babs had left the house!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I have Babesia right now, my doctor put me on malarone. Before, I was having severe hot flashes, but now they're starting to dissipate. As for the headaches, I still have them, ive had them since I was 5 years old. Leg pain as well.
-------------------- 12 Year Lyme's Disease Sufferer Posts: 13 | From Youngsville, Louisiana | Registered: Dec 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I was on Babesia treatment for about a year. I started with a proprietary herbal formula, and then Mepron/Zith for almost a year.
I had gone undiagnosed with Lyme and Babesia for 8 years at least.
For sure the symptoms that got better for me were the following:
brain fog night sweats (gone) tinnitus now less, but not gone ability to think improved needing a nap less often, but still most days. memory somewhat better
Hope this helps!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
I have been treating babs for 6 mos. now. mepron 2 x tsp daily\ceftin\biaxin\diflucan also have so-infecions. about 4 month into treatment stiff neck is 80% better. night sweats almost gone. has not touched the swelling in my brain. will see neuro tomorrow and LLMD in jan 15. i have other symptoms but i'm not really sure which is babs or bart etc....joan
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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