Topic: People that know they have babesia without typical symptoms
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Are there any people that have positive test for Babesia, but don't have profuse sweating or air hunger?
I guess I'm just getting tired of being sick and looking for new answers. I have mentioned before that my doc said I might have a partial immunity to babesia; but I have no idea what that means. Will ask in May.
I treated with Malarone for 2 months, earlier in my treatment.
Lately I have a lot of asthma, which I have had all my life. This makes it hard to know if I actually have air hunger. Also just recently I started waking up at night slightly sweaty, but no where near profuse.
My fatigue is awful, definetly profound. I still have lyme symptoms, like pain in my knees, shins, muscles, tendons, etc. Brain fog is somewhat better but not completely gone. I still have the feeling that I am choking, but that comes and goes and has since the first day I became ill.
Anyway, what I want to know is what symptoms do ppl with positive babesia test have besides profuse sweating and air hunger? I know what the symptom list says. Just want individual experiences with babs.
posted
My son has suspected Babesia just because of his air hunger issues which are not real drastic just occasional.
His LLMD is treating it with Azithromycin first with something else to be added later ( can't remember what right now ) and just light doses of that are really increasing the air hunger.
So to me that kindof confirms that he does have it.
He has only had light night sweats if any and alot of headaches but who knows if the headaches are Lyme or Babesia or even the Erlichiosis ( he also tested positive for that)
Posts: 448 | From minnesota | Registered: Feb 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
SG, I have a very positive WA-1 IgG test (1:1,024 titer). I don't have night sweats. Air hunger at times. Fatigue is bad.
I know what you mean about always chasing the next idea. It gets old. I know you don't want to hear this, but I believe you're undertreating significantly. You mentioned you started out aggressive and didn't notice a lot of difference, but to hold true to your theory it was earlier in the game and it may have taken time to see gains.
While it may take 3-5 years, I don't think we can just 'hope' improvement occurs w/o aggressively trying angles. I understand there are no guarantees in life.
Your Babs treatment was nowhere near sufficient if in fact you have it!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'm in a similar boat as to not knowing if I have Babesia or not. Shortness of breath has been a major symptom of mine for several years now, I also have asthma... so... docs just assumed it was asthma related. I don't have drenching sweats, although have woken up multiple times unusually sweaty lately.
When people have air hunger, can they breathe normally but just feel short of breath, or do they have tightness in lungs too? What I get usually is chest tightness, so it feels like I can't take a deep breath in. But no wheezing, just feels like my lungs won't expand and take in oxygen.
Yet several other times, such as when I tried Bactrim (for several days only), and when I feel unusually sickly, I'll go into 'panting breath' mode, where it feels like I can sorta breathe, but need to take quick shallow breaths. It's sort of weird.
Posts: 584 | From NY | Registered: Feb 2009
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posted
My experience basically resonates with the others. Night sweats is not something I significantly experience, but have had the air hunger problem on-and-off for a long time.
For me, it feels like a kind of pressure either around the chest or centered on the sternum (which becomes inflamed). During flare-ups, it feels like I'm only taking shallow breaths; and if I try to inhale deep, it feels like I'm tightening up my lungs so I can't breathe. Rare occasions have brought on nerve tingling and panic.
But only a few times I can remember waking up with night sweats. When it happened, it occured maybe 3-4 times within a couple weeks.
Only VERY recently have I started having problems with my balance (the rocky-boat feeling). That has been the worst symptoms of Babs I've been experiencing thus far.
But, I'm assuming starting my treatment and supplements is what has caused some of these symptoms to appear and flare-up. I've been on Amoxicillin for a couple weeks, but I JUST started minocycline. I can't connect it with helping for sure, but I'm definitely having a better day with the balance issues. We'll see tomorrow.
Also, visual problems (or focus issues)...my LLMD relates to Babesia as well.
And, I tested mild-moderately positive for Babesia WA-1 through either Igenex or Labcorp (can't remember at the moment, but believe it's Igenex).
Question for others:
Do you ever feel like you MUST burp to relieve pressure in the chest and get a better breath?
Posts: 829 | From MD | Registered: Dec 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
Are you sure it is not mycoplasma?
My daughter had the chest tightness and air hunger, but no babesia. Also had asthma..but this has all cleared now. Believed it was the mycoplasma LLMD says.
Also, my two other family members tested positive for babesia...but have no symptoms at all.
Go with the symptoms and treat those...but do look into mycoplasma as well, as that is a big culpret for many with lyme. All these darn symptoms overlap and makes it hard to knw what is what. Blessing, lp
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
Great thread I was wondering the same thing! B/c I tested positive for babs but didn't have the typical symptoms!
BTW, I'm about to start my 3rd month of Mepron soon and I never had the "typical" babesia symptoms.
Never had chills or fever or night sweats. Did have headaches, a little "air hunger" and a lot of fatigue.
All of those are pretty much gone now except I'm still fatigued, but not like I was.
However, my main symptom is neurological the "brain fog" or a feeling of a altered mental state.
I can think clearly now and I can remember and function normally for most part, but I feel like I'm "high" all the time!
My LLMD said it could be babs it could be bart or all three attributing to this "high" feeling.
Dr. thinks it's all the toxins that are making me feel "high"!
I'm wondering if I still have babs? My liver counts were slightly higher than normal I guess due to the Mepron.
I rather not take the Mepron if I don't have babs anymore, but my Dr said until my symptoms are gone I have to take it. Maybe another 2-3 months!
Back to the "high" feeling, feeling of a "altered mental state"? Kinda of tipsy spacey feeling.
This is my main symptom that's driving me crazy. It's very hard to lead a normal life!
My anxiety, chest pains, major lower back pain, neck pain are pretty much gone.
However, the mental feeling and my eyes are still bad. My eyes are very red/floaters, I look like I'm on drugs.
Other symptoms I have are ringing in the ears, slight pain/twitching in calves, skin markings that look like little scabs and body temp of 97 all the time.
In addition to those I have other symptoms too which I feel I could deal with once the "high" feeling goes away like sore thumbs, heal pain and knees creeks and cracks.
Current abx: Zithromax/Plaquenil/Mepron
Posts: 133 | From Philly/NJ | Registered: Nov 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Here's the link for Lyme MD's lastest blog about Babesia dated March 3, 2010...
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lymeladyinNY
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Member # 10235
posted
I have never had night sweats. In fact, I've had a symptom of babesia that I've never seen mentioned before.
In July, 2008 I was taking care of luggage after a vacation with my family. All of a sudden my eyes rolled back in my head and I dropped to the floor.
This started to happen regularly and I nearly hit my head several times. Then, an even worse symptom began to appear. I would suddenly have a locked-in state when I laid down. I would be talking and then it appeared as if I'd go to sleep, however, I was totally aware.
I would snap out of it after a minute - or 30 minutes. I never knew how long I'd be trapped in this state with my eyes closed.
It was terribly frightening as I could not respond in any way nor open my eyes.
I was also dealing with clawing abdominal pain at this time. It was horrific.
I finally had a lightbulb moment when I was lying in bed with utter fatigue and headache - "This is babesiosis!"
I started to self-treat with some mepron/zith that I had stored in my cupboard. My LLMD was not convinced my symptoms were babesiosis. Sure enough, though, all of these symptoms began to go away.
I convinced my reluctant LLMD to give me more mepron and I started artemisinin. I took 300 mg of art and had respiratory distress. When I called my LLMD she told me, inexplicably, to stop zithromax.
I said, "Are you sure? I thought that zithromax stops mepron resistance." She started rambling about pathways in the body and how I needed to stop it.
After I hung up with her I told my husband, "We need a new LLMD."
Since then, I've been seeing another LLMD who has been very aggressive. I still relapse with babs, though, after about a week and a half of not taking mepron/zith. But, I've not experienced the profound symptoms that I had in 2008.
Now my current LLMD tells me that I'm too complicated for him. He's sending me to another LLMD who he says has much more experience with successful babs treatment.
I'm ok with that, so long as it works out.
That's my long babesiosis story! - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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sutherngrl
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Member # 16270
posted
My doc does not treat both lyme and babesia at the same time. And since most of my symptoms point to lyme and my test too, he is putting lyme ahead of babs. I guess if I don't improve in the next year, he will re-treat for babs.
Seek, I know what you are saying; but I guess I'm still believing in my LLMDs philosophy on how he treats. I will probably ask him if he can just treat for both at my next appt.
LP, as long as I have been on antibiotics mycoplasma should be gone.
Doc says when people remain ill for a long time after treatment, it is either lyme or babesia.
Guess I am just going through a frustrating time right now. You know how you get "impatient" from time to time.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I tested POS for Babs ages ago, before I found out about Bart. I only get the tightness in the ribs and short f breath feeling. I get air, just the rib cage is so stiff. I only got night sweats a few times, rarely drenching. I've had this forever. I know shortness of breath can also be bart related. So hard to tell what is what. I haven't had Malarone or Zith/Septra for a while and suspect my babs is taking forefront and I may be mistaking it for Bart.
But, to answer your question, yes, I have similar. I was told that I had a mild case of babs via ART by someone lyme literate. I always suspected this. You would think it would be easier to rid.
Posts: 19 | From New York | Registered: Jan 2010
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17hens
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Member # 23747
posted
Why don't LLMDs just treat for everything...the tests are far from perfect, and (for example) if you have lyme and bart symptoms, babs can still be hiding and not testing positive.
Why not just be safe and treat for all? It's not going to hurt you to be treated for something that you don't have, is it?
My LLMD said I had a tick and a bull's eye and lots of various symptoms, so rather than make me spend lots of money for tests that may or may not be correct, he would just treat me for everything. I agree! ---------------------------- Been -
What you wrote sounds exactly like me, "However, my main symptom is neurological the "brain fog" or a feeling of a altered mental state. I can think clearly now and I can remember and function normally for most part, but I feel like I'm "high" all the time!"
Have you tried Andrographis? It has worked wonders for me - I have my brain back!! I can't recommend it enough!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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quote:Originally posted by 17hens: Why don't LLMDs just treat for everything...the tests are far from perfect, and (for example) if you have lyme and bart symptoms, babs can still be hiding and not testing positive.
My doc sort of does this too, but he goes very slowly, and treats one at a time. But he bases that decision off of my symptoms.
He will begin treatment for Babesia for me, but it most likely will be a 4 week test to see how I respond.
The only danger is with drug side effects, and for quinolones (for bartonella), there can be a lot of rather bad side effects, like snapped tendons. So I don't think most docs just treat for everything unless the patient has some obvious symptoms or test positive.
Posts: 584 | From NY | Registered: Feb 2009
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sutherngrl
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Member # 16270
posted
My doc treated me for babs for 2 months, after treating me for lyme for about 6 months. Then he felt like my symptoms were pointing more toward lyme. I have been treating for almost 2 years so far.
He has not ruled out babs altogether, but still believes its probably all lyme.
Having asthma makes it really difficult to distinquish that from babesia. I just read the symptoms of asthma, and I do actually have them to a tee. My inhalor is not helping though.
I just emailed my LLMD on how I have been feeling and called their office to tell them that I sent the email; and guess what, they are out until Monday.
posted
Don't have an LLMD but my infectious disease doctor does not treat co-infections.
Five or six years ago a had huge scary air hunger, I kept illiminating foods as i thought it would be a reaction to something. It was like being in a sauna felt i needed to find crisp fresh air.
I very rarely have air hunger now but as far as the sweats are concerned i sleep on towels and have to change my pj's three or four times a night.
Every morning about 30 seconds after waking i am drenched. I am not sure if this would be babesia but the constant sweats and chills are really draining.
regards maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Haley
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posted
I have not had the usual symptoms for Babs but I suspect it is my main problem. I have not treated it yet.
My worst symptom is complete BRAIN FOG (understatement). Of course the fatigue also. Ironically, today I woke up with chest pain and feeling like I couldn't breath. I don't usually have that. I've been treating for almost a year.
Could this be a clue - I became violently ill after I was bitten. More ill than I have ever been in my life, throwing up etc... Is this a clue to Babesia? I think I read that in Dr. Bs guidlines.
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TF
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Member # 14183
posted
I had a positive babesia microti test from Igenex. They saw the babs in my blood through a high-powered microscope, my lyme doc said.
I never had night sweats and I never had air hunger. Never.
My doc was surprised by my test results. This was because I got virtually symptom-free just by treating lyme disease. But, if I ever quit treatment, it only took 2 weeks to be as sick as I was at the start.
So, my babs symptoms must have been extremely subtle. Once I started babs treatment, however, I got sick every 7 days like clockwork. Doc said it was the 7-day babs cycle.
Babs was the last disease I treated.
I finished my treatment almost 5 years ago, and I am still symptom-free, enjoying my life.
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Haley
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posted
wow TF you are so inspiring! I am keeping a calander of when I get really sick. I put red stars on really bad days. It's proabably about every 6 to seven days. Hmmmmm
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map1131
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Member # 2022
posted
I wish CaliforniaLyme was still around. She was one great babesia expert here. I've been searching for 2 days trying to find a 3(?) yr oldpost/thread in which she made me wonder after all these years if....
I'm also unknowningly carrying a babesia infection too. For some reason I can't get Sarah's warning to me out of my mind lately. But brain fog me can't remember her exact warning message to me.
Doing a search for babesia & CaliforniaLyme is like finding a needle in a haystack. Someone tell Sarah she is truly missed.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
SG, I was just the opposite. I tested negative but have and still have some predominate Babs symptoms. It's the worse for me out of Lyme and Bartonella.
Babesia causes terrible crushing fatigue. Although mine is so much better now. I've been an "almost" normal person without that bad fatigue. I had night sweats and chills, just occassional now.
You need more than 2 months of Malarone if you want to get rid of Babs. I personally think it's the hardest of the TBD's to get rid of. Hey, but that's only my personal opinion. I'm sure other would disagree and they may be right. But it seems like it is my problem child of TBD.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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Vermont_Lymie
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Member # 9780
posted
Babesia can cause alot of atypical neurological symptoms, in addition to the typical asthma and fatigue.
For example, it can cause dizziness, a range of pyschological symptoms (anxiety, depression), and cognitive dsyfunction.
This is in the published literature, and I experienced it directly. Many people being treated for lyme have said that their worst symptoms only lifted after babesia treatment.
Just a couple of months of babesia treatment led to major improvements of my meurological symptoms. More than 2 months of treatment is necessary to get rid of babs, it can be very persistent.
And my asthma disappeared after babs treatment.
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METALLlC BLUE
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Member # 6628
posted
quote:Originally posted by Lemon-Lyme: I'm in a similar boat as to not knowing if I have Babesia or not. Shortness of breath has been a major symptom of mine for several years now, I also have asthma... so... docs just assumed it was asthma related. I don't have drenching sweats, although have woken up multiple times unusually sweaty lately.
When people have air hunger, can they breathe normally but just feel short of breath, or do they have tightness in lungs too? What I get usually is chest tightness, so it feels like I can't take a deep breath in. But no wheezing, just feels like my lungs won't expand and take in oxygen.
Yet several other times, such as when I tried Bactrim (for several days only), and when I feel unusually sickly, I'll go into 'panting breath' mode, where it feels like I can sorta breathe, but need to take quick shallow breaths. It's sort of weird.
That's air hunger.
-------------------- 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.
posted
Slowly as I'm getting my brain back due to treatment I'm starting to put all the pieces together that all the ducks have missed in the last 9 months.
During my initial blood test right after I become very ill all bloodwork came back normal except my IgE antibody was slightly elevate at 123. Note that I never had ANY allergies all my life.
I went to 2 allergist who told me I have allergies and said that allergies can make me feel "foggy".
What I was experiencing was more than a "foggy" feeling. I felt like I had one foot in hell and the other one on the Moon.
Fast forward, after getting a Echocardiogram of the heart and a Doppler of carotid artery it was discovered that I had a pulmonary insufficiency.
Duck told me it was nothing to worry about, but that really bothered me.
I went to a Pulmonologist expressing my concerns about the pulmonary insufficiency and he tested me for asthma. I performed a lung test which I failed.
He didn't diagnose me with asthma since I didn't have any previous history and said it was due to allergies, but stated that I may have developed it now according to the test results.
He put me on Singulair! After 2 pills of Singulair I started having rib pain. The right side of my chest hurt really bad especially if I took a deep breath.
I called the duck and he said that he never heard of such a side effect. I stopped the Singular, pain stopped and I never went for a follow up appt.
At that time I was already researching Lyme and figured that's what was causing all my symptoms.
Now here are my own thoughts based on the research I've been doing:
Pulmonary insufficiency was most likely caused by Endocarditis of the Pulmonary artery. I'm think Bart my be squatting there?
The elevated IgE was cause by Babesia. I did bloodwork last week and my IgE is normal. I've been on Zithromax/Plaquenil/Mepron since January.
In December the IgE was 122 before the current treatment. In December I just finished Doxy and started taking Cefzil.
During my research I found out that not only is the IgE antibody present for a allergy, but also present during protozoan parasites infection such as Plasmodium falciparum.
Plasmodium falciparum causes malaria so I can see how Babesia could have increased my IgE antibody too.
Finally, after starting treatment for Babs I feel like I can breath better and the chest pains have stopped.
Therefore, I feel like my so called asthma diagnoses was really Babesia.
My LLMD is planning a 6 month treatment for Babesia. I'll keep everyone apprised of my progress.
So far I feel like this protocol is working Posts: 133 | From Philly/NJ | Registered: Nov 2009
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Marz
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Member # 3446
posted
I was diagnosed with bart 6 weeks ago and LLMD said she's suspicious I have babesia too.
I was lucky to have an identifiable bart rash, otherwise symptoms not classic for either except for the headache anenlarged lymph nodes for bart.
Maybe I'm changing thte topic too much here for this thread, but I'm wondering if you can get a positive test for either one after being on abx for 5 weeks.
I tested negative for both in 2006.
Have relapsing lyme since 1992. too little too late diagnoses and treatment back then.
I have a new PCP who is sympathetic to lyme and think he might be willing to test for both but not sure if this is the time to do it while on abx.
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