posted
I wasn't tested for it. I don't think it has been reported in tick-bite victims this far upstate, but many cases apparently are asymptomatic, so they would go unreported. I'm concerned because some of my most troubling symptoms (especially the vertigo) are the same as some here who say they have babesiosis.
Many here are saying say it is primarily a clinical diagnosis. What are the signs/symptoms? What would a negative test mean if all I am experiencing is vertigo (no jaundice, splenomegaly, or hepatomegaly)?
In short, what is the clinical presentation that leads an LLMD to give a diagnosis of babesiosis in the absence of a positive test, and then to prescribe treatment for it? I don't want to be over-treated, but neither do I want a disease I may have to go unnoticed.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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I had many of these symptoms in the beginning, but the same symptoms could have been a viral infection or Lyme itself:
Chills... Yes (violent)
Fatigue and often excessive sleepiness... Yes
High fever at onset of illness... Yes
Night sweats that are often drenching and profuse... Yes
Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)... No
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" .... Yes (profound)
Depression... No
Episodes of breathlessness, "air hunger", and/or cough... No
Decreased appetite and/or nausea... Yes
Spleen and/or liver enlargement... Not remarked upon by either clinical examiner
Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)... Not sure. I know my WBC was a bit high
Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)... Severe and persistent, but mostly on the sides and top of head
Joint pain (more common with Lyme and Bartonella)... Actually, most of my long-term joint pain seemed to disappear, but some of it is coming back now. Still 5 days left on the doxy
anxiety/panic (more common with Bartonella)... No
Lymph gland swelling (more common with Bartonella and Lyme)... Yes
Again, if I insist on a babesia test and it comes back negative, do my above symptoms cry out for treatment anyway, or could it be that I just had a bad virus, Lyme, or (as the last person who examined suggested was possible), a coincidental infection with both Lyme and a nasty virus simultaneously? She really believes that both the vertigo (inner ear infection) and the Bell's Palsy (unilateral paralysis of the 7th cranial nerve) were more likely caused by a viral infection and not the Lyme.
BTW, she isn't discounting the possibility that I have Lyme (even though the test came back negative), she just said she's seen numerous confirmed Lyme cases and has never personally seen Bell's Palsy associated with it, but has seen a lot of it associated with a viral infection over the last 20 years.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Bells palsy is such a classic lyme symptom that in the state of Maryland, everyone who goes to the hospital (and maybe all doctors offices too) and is diagnosed with bells palsy MUST be tested for lyme disease.
Burracano has a section entitled "Sorting out the Coinfections" and he lists the symptoms that distinguish babesiosis from the other diseases. Here is the list:
From pages 26-27 of Burrascano:
"Rapid onset of initial illness, often with sudden onset of high fever, severe headaches, sweats and fatigue, thus it is easy to know when infection began. � Obvious sweats, usually at night, but can be day sweats as well. � Air hunger, need to sigh and take a deep breath; dry cough without apparent reason. � Headaches can be severe - dull, global (involves the whole head, described like the head is in a vise). � Fatigue is prominent, does not clear with rest, and is made worse with exercise. � Mental dullness and slowing of reactions and responses. � Dizziness- more like a tippy feeling, and not vertigo or purely orthostasis. � Symptoms cycle rapidly, with flares every four to six days. � Hypercoaguable states are often associated with Babesia infections. � Rarely, splenomegaly . Very severe Lyme Disease can be a clue to Babesia infection, as it will make Lyme symptoms worse and Lyme treatments less effective."
I had no obvious symptoms of babesiosis, but yet I tested positive for it through Igenex. And, as soon as my doc started treating me for it, wow, what a reaction. So, there is no doubt that I had it.
I'm glad my final lyme doc tested me for all the coinfections. That's how I found out I had babs and bart.
If you test negative, and your doc treats you for the diseases you know you have, then you can expect that if you have babesiosis, the symptoms of that disease will come to the fore. You won't get well, if you have it, until you treat it.
After treating the diseases you know you have, if you are still sick, try treating babesiosis and see what happens. I took Bactrim DS which is not expensive at all. That really brought out the 7 day babs flares. It was totally unreal!!
In April, it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. I had undiagnosed lyme disease for at least 10 years (plus babs and bart).
Posts: 9931 | From Maryland | Registered: Dec 2007
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Haley
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Member # 22008
posted
I'm sure that I have Babesia and I do not have a positive test. Your symptoms do definitely sound as if you have it.
If you have a negative test you may want to try something like Artemisinin (sp). If your symptoms flare with this you most likely have Babs or some type of parasite.
My main symptoms are - pressure and headaches at the crown of my head, severe confusion and cognition problems and I also had a sudden onset of illness. I was very, very ill, barfing like crazy.
Oh - I also have lots of fatigue but I didn't really have that until I started treating it.
Posts: 2232 | From USA | Registered: Aug 2009
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lymeboy
Unregistered
posted
I have not tested pos for babs yet I am reacting to treatment. mepron has made some of my symptoms quite pronounced. I had even less symptoms than you. My biggesy one was the tippy, off balance symptom. this actually started while on a cross country motorcycle ride. - havent done much riding since then! Anyway, this seems to be a big indicator for Babs. The tests are flawed....
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posted
I tested negative for babs.Was clinically diagnosed,and treated. I had quite an aggravated response when I started my babesia treatment,I definately had it. Fogged, looks like most of your symptoms are babs.
Posts: 342 | From northern california | Registered: Dec 2010
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t9im
Frequent Contributor (1K+ posts)
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posted
One of the problems with the test is its typically only for B.microti since the ISDA doesn't think B. duncani is on the east cost and ignornes the other strains completely.
Fogged has a good list. We attributed my daughters babs symptoms (although some could have been her lyme symptoms) as: 1) initial high fever - yes. 2) day fevers - yes, starting a couple of months after the initial fever. 3) vertigo type symptoms (poor balance and car sickness as two indicators) 4) air hunger - example couldn't hop 10 feet without starting to gasp for breath (this was 8 months in at the LLMD's office, we hadn't seen it as the fatigue keep her from really exercising). 5) fatigue - yes. 6) Sleep anxiety - yes.
She has been negative on the IgeneX babs tests 4 times.
She has been negative on the IgeneX Lyme tests 4 times but has had 30, 34, 41 as positives depending on the test as well as 31, 39 IND a few times.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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posted
One of the problems with the test is its typically only for B.microti since the ISDA doesn't think B. duncani is on the east cost and ignornes the other strains completely.
Fogged has a good list. We attributed my daughters babs symptoms (although some could have been her lyme symptoms) as: 1) initial high fever - yes. 2) day fevers - yes, starting a couple of months after the initial fever. 3) vertigo type symptoms (poor balance and car sickness as two indicators) 4) air hunger - example couldn't hop 10 feet without starting to gasp for breath (this was 8 months in at the LLMD's office, we hadn't seen it as the fatigue keep her from really exercising). 5) fatigue - yes. 6) Sleep anxiety - yes.
She has been negative on the IgeneX babs tests 4 times.
She has been negative on the IgeneX Lyme tests 4 times but has had 30, 34, 41 as positives depending on the test as well as 31, 39 IND a few times.
Good luck.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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quote:Originally posted by Fogged: I wasn't tested for it. I don't think it has been reported in tick-bite victims this far upstate, but many cases apparently are asymptomatic, so they would go unreported.
I got it in Indiana .... it's definitely in upstate NY.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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t9im
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posted
Here is a good read on a case with the LLMD comments
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Catgirl
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Member # 31149
posted
Fogged, I'm surprised your doctor doesn't suspect it. But I think the lyme docs focus on what we are complaining about the most during our office visits.
I'm no doctor, but I think vertigo is definitely lyme related. I had to be hospitalized for it 3 yrs ago. I couldn't even walk to my mail box for 6 weeks. In total, I had it for 3 months, and it still tried to come back over the past three years (lyme went undiagnosed by many drs).
Now I'm being treated for babs, and I no longer have that feeling in my ears. I just have to worry about tipping over (ha ha)! I walk like a mummy when I'm herxing (people just stay out of my way--ha ha!). It's funny because it's true
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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posted
Whoops, lyme brain, my vertigo was two years ago.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Babesiosis presents with a scary symptom for me "locked-in syndrome". I went through the hell of being totally awake but being totally unable to move or respond. I've never heard of anyone else having this symptom. Artemisinin and mepron/zithromax helped a lot, but once in a blue moon this still happens. So frightening!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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nefferdun
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posted
I can't believe your doctor does not suspect you have babesia and says Bell's Palsy is not caused from borellia. You need a second opinion ASAP.
I live in Montana which is about 1000 miles from the "Lyme Zone", according to the old boundaries, and I tested positive for borellia, ehrlichia and babesia duncani. As I was bitten here, got the rash here and never left the state, I was infected here. There is no doubt you can get it in upstate NY!
Your symptoms are classic.
-------------------- 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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Catgirl
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posted
Blood tests are just tests. Doesn't the western blot have a 35% false netgative rate (Under Our Skin)? Besides, I think that there are quite a few forms of babesia that simply are not tested (I think that no tests are available for them).
Maybe you should consider what nefferdun said and get a second opinion.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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I'm trying to get in to see a LLMD and am now on the cancellation list for a couple of them that are within driving distance. One LLMD has a 12 month waiting list. I will be extremely ill by then, so what's the point? I am angry that my primary and his PA are using their convincing bedside manner to get me to drop the Lyme issue. I intend to be relentless this time, at least until I can get in to see someone who actually has a clue.
As I've mentioned in another post here, I was definitely bitten by a deer tick two years ago and told to "wait and see" if I developed the bulls-eye rash. I didn't, but two months later I got vaguely ill and spent the rest of the summer in a state of weakness, confusion, and general malaise to the point of staying in bed most of the day. No test was ever performed.
Then, later that fall, I came down with Swine Flu. Funny thing there was I was never tested for that. I called, told them my symptoms, was diagnosed with Swine Flu over the phone and got a script for Tamiflu. I recovered rather dramatically without ever seeing a physician.
The reasoning behind the diagnosis was:
A. Flu was the most likely thing that would cause my symptoms
B. There was no seasonal flu being reported in my area
C. There was lots of Swine Flu being reported in my area, therefore.....
D. I must have Swine Flu
H-mmmm... isn't that a double standard since they try to tell us Lyme can't be diagnosed without a positive test?
At any rate, my major flu symptoms disappeared within a few weeks, but I was left with a profound fatigue and malaise for the remainder of the winter. Was it long-term sequelae of the flu, or was it late-stage undiagnosed Lyme from the bite earlier in the spring?
I've been sick for a very long time and I've always allowed my primary to convince me that it was whatever he said it was. I had mentioned the possibility of Lyme several times over the years, only to get the "kind hand on the shoulder" routine and the condescending smile telling me it was not possible, that it was all in my head.
Time to get to the bottom of all this.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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Catgirl
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posted
Don't accept your doctors blowing you off. They only know what they've been taught. The ILADS drs are specialists who know much more about lyme than 99% of other doctors (just my opinion).
You've seen Under Our Skin, haven't you? Have you read "Cure Unknown"? Just by watching the documentary and reading the book, surely you will want to pursue a better doctor.
Remember what Schopenhauer said: "First it's ridiculed, second it's violently opposed, third it's accepted as self evident." (someone else quoted him on this site and I think it definitely applies to lyme).
You're just "stuck" right now. Push yourself, and go see another doctor, even if you have to go out of state. Just don't settle, ever.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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t9im
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Member # 25489
posted
Fogged:
You sound just like what happened with my daughter with the tick bite and flu but we were more proactive when the IDSA MD indicated her developing lyme and babs sypmtoms were physcomatic.
This guy is great, like Dr. B you have to read him more than once to remember some of this stuff.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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nefferdun
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Member # 20157
posted
t9im, that is a very good site for information.
I want to correct something he said - that sweating is the primary symptoms pointing to babesia. That may be true of microti but not duncani. I had very little sweating until after starting treatment and even then, it was light.
-------------------- 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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t9im
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Member # 25489
posted
nefferdun:
I think Dr. B's guidelines, then cure unknown, then this LLMD Blog have helped my understanding and ability to help my daugher as well as others.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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quote:Originally posted by Fogged: I wasn't tested for it. I don't think it has been reported in tick-bite victims this far upstate, but many cases apparently are asymptomatic, so they would go unreported. [/qb]
I got it in Indiana .... it's definitely in upstate NY.
- I got babs in Texas...many many years ago.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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quote:Originally posted by TF: Bells palsy is such a classic lyme symptom that in the state of Maryland, everyone who goes to the hospital (and maybe all doctors offices too) and is diagnosed with bells palsy MUST be tested for lyme disease.
- Wish that was universal .. too bad they don't use Igenex!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
@lymeladyinNY... you mentioned you get "locked-in syndrome". I have something similar, but it only happens when I'm sleeping or on the verge of waking. I'm dreaming that I can't move and I can't even move to breathe. I keep trying to move so that I don't suffocate. I keep telling myself "move, move, do something!" and eventually I gasp for air and wake up. I can't imagine feeling anything like that when awake. yeesh.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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posted
Ah yes, good 'ole sleep paralysis. It's absolutely terrifying. Mine comes with a loud wind rushing through my ears and the sense that someone is about to kill me. Lovely, huh? I feel bad for anyone else who has to live through that experience. For me it's a very rare thing, which I am grateful for, and one I never considered as connected to lyme.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
yep i experienced this a couple days ago for the first time, but it only lasted a few seconds. I was pretty groggy that morning then i had some kind of mental block where i couldnt move couldnt close my eyes, but i snapped out of it pretty quick.
Posts: 113 | From south dakota | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wow, Jenifer, I've had the same thing happen to me! I thought it was some bizzare form of sleep apnea (very scary). I noticed that if I don't get enough rest, it happens more often (can't let myself get too tired). It's better now that I'm on meds too.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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