posted
Some background: I treated Babesia for over a year (Oct 08-Dec 09) with mostly Mepron/zith/artemesia. Last summer/fall added in IV Clindamycin for a few months, then switched to Malarone in Nov, and finished off in Dec by adding in a pulse of Lariam (the loading dose).
My LLMD decided to stop Babesia treatment after I didn't herx since starting the IV Clindamycin nor on the Lariam. I also had a negative Babesia PCR and FISH (apparently the FISH is pretty sensitive?).
So I haven't done any babesia treatment since the new year, so almost 7 months now. My LLMD thinks it's still gone, but I treated and struggled with it for SO LONG that I can't stop worrying that every remaining or new symptom is unresolved Babesia (I've continued treating Lyme and Bartonella).
I've never had night sweats, so can't use that as a gauge. I have fatigue, fevers, cognitive dysfunction, but those symptoms are so general that they could be caused my any infection (or even toxins or inflammation)...plus I've had these symptoms all throughout my illness, including throughout Babesia treatment.
In the past few months, I've developed pretty severe psychiatric issues (depression similar to my early babs herxes), then once that lifted now suddenly have major ADD-like issues (zero ability to concentrate or accomplish any task), and now this week back to unrelenting fatigue that I haven't had in well over a year.
I've also been having lots of sleep difficulties, so that may account for the fatigue and brain issues. Also been running fevers consistently again the past 2 weeks and re-experiencing the severe fatigue and "brain-dead" feeling I had for years until I'd treated babesia for several months (and would get a return of these sx within a few days of any breaks from Mepron).
My LLMD maintains these symptoms are all toxicity and brain inflammation...but now I'm sicker than ever since finishing IV 4.5 months ago, and with my current symptoms can't help being concerned it's babesia.
Any thoughts? Sorry for the long-winded post...see I really have MAJOR brain problems!
Posts: 408 | From California | Registered: Apr 2008
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groovy2
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posted
Check body temperature several time a day-
Usually Babs causes LOW Overall body temp--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Erica, I'm struggling with the same thing. Different symptoms, but wondering if I'm still fighting babs.
I treated with antimalarials for two weeks and it kicked my butt! Bedridden for the first 4 hearx days then much,much improvement, especially in body temp.
Now, I'm back to feeling cold all the time and having lung/breathing difficulties.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
Jay, Interesting since I thought Babesia is usually associated with fevers?
I just took a look at Dr. B's infection symptom lists in his guidelines. Copied some symptoms that apply (or applied) to me.
Babesia:
� Rapid onset of initial illness, often with sudden onset of high fever, severe headaches, sweats and fatigue... � Fatigue is prominent, does not clear with rest, and is made worse with exercise. � Mental dullness and slowing of reactions and responses
So chronic Babesia actually causes low body temps instead of fever? I wonder why Dr. B doesn't mention this pretty key fact?
When I was diagnosed with Lyme 2 yrs after getting sick, the LLMD (who's considered quite good) said my chronic fevers indicated Babesia. HOWEVER, another LLMD did tell me that Babesia doesn't usually cause fevers after initial onset (this was after 6 months of babs tx, still running fevers).
And what about NIGHT SWEATS??? I've never had those! My current LLMD says night sweats are the main indicator of babs.
Lyme:
� Afternoon fevers, often unnoticed- most Lyme patients have subnormal temperatures in the AM but rise to 99+ by early to mid-afternoon. No obvious sweats.
Ok this DEFINITELY describes my fever pattern (except I don't get subnormal temps...my AM & night temps are normal).
Geez this is SO confusing! Why did I get spike in fevers early in babs treatment when I was herxing, and then again a few months later when I added artemisinin???
And the ONLY time I had weeks of consistent subnormal temps was when I first started Bicillin (hits Lyme only hard, right?)
Since stopping Babesia treatment 6+ months ago, my fevers usually spike when taking Flagyl and after being off abx a few weeks. (I'm doing pulsed treatment, alternating a few weeks on tx and off.)
I'm so confused my head is spinning...well even more so than usual!
Posts: 408 | From California | Registered: Apr 2008
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posted
Blinkie, What does your LLMD say about your Babesia symptoms and response to treatment?
And what does he say about Babesia symptoms in general? I'm especially interested in any babs symptoms he considers common and key indicators, that you DON'T have.
I find it most interesting what the LLMDs say about the "iffy" cases, where symptoms aren't clear-cut and could be from ANY infection.
Or when symptoms aren't caused directly by infection...but rather inflammation and/or heightened immune response. My LLMD usually gives me that explanation, which makes sense except that my fevers and cognitive slowing are getting increasingly worse the past week...now that I've been off ALL abx for 5 weeks straight!
Posts: 408 | From California | Registered: Apr 2008
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blinkie
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posted
Erica, I'm getting off the "testing is too sucky to waste money on" boat. I'm going to go to the Sonoma County Health dept soon for babs duncani testing. This shooting in the dark crap isn't working for me anymore!
My LLMD says it "could" be babs or some other parasite. He is certain it's a parasitic infection from my response to antimalarials.
He only told my hubby that haeart palps were from babs.
Erica, it seems like the response that all these symtpoms are due to inflammation sounds like a "cop-out" for the fact that he can't pinpoint the cause. No LLMD can. All these illnesses have so many overlapping symptoms.
Posts: 1104 | From N.California | Registered: Jan 2008
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if your score is high then its a pretty safe bet lyme is not the problem, if your still having symptoms of babs its probably still babs imho !
if you have deep pockets,unlimited funds or a great insurance company none of the rest of us have heard of test away, if not I would spend my hard earned cash of killing the babs again just my humble opinion.
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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nefferdun
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posted
I think lyme causes a low body temperature but babesia causes your temperature to spike.
Perhaps you should see another LLMD. This one might not want to admit his mistake. It sounds like you are sick again and need help.
When you say it could be any virus, isn't that what we all thought we had "over and over" before diagnosis?
-------------------- 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
CD57 is still low..It's still the lower score I've ever heard of, and I can't even think about w/o getting severely depressed.
My LLMD is actually excellent (IMO), and I can't imagine changing. He's not perfect of course, none of the top LLMDs have all the answers given the complexity of this disease and the unreliable testing, etc. Please correct me if I'm mistaken!
When I said "any infection", I meant mainly Lyme & co-infections, but of course there could be any number of additional opportunistic infections still going on such as viruses, parasites, fungal..?
I'm sorry, just having a rough past few days...and just esp concerned because have return of symptoms that had long been gone after several months of Mepron/zith/art...even before starting IV almost a year ago.
The troubling returned symptoms are unrelenting fatigue and "brain dead" feeling, and may happen to coincide with a period of consistent fevers (which have come and gone anyway).
I think the answer is there is no answer?
I guess I'm restarting Babs treatment on Monday - Mepron, zith, artemisia, Bactrim - so will see what transpires. A week ago, LLMD said he'd reconsidered re-treating babs and was going to send me a revised treatment plan and call in the scrips, but never got anything...so I guess I'll just restart the babs tx. I just don't know what to do anymore...
Posts: 408 | From California | Registered: Apr 2008
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posted
erica you will know night sweat if you get them or day time sweats for that matter !
I have menopausal women ask me if im ok when they see me sweating at work or at the grocery store.
as far as low body temps I checked mine for 2 full months I average between 94.7 and 96.3 degrees, chances are pretty good you dont have babs and thats why he took you off the meds.
you would know it too if you had a babs herx its a brutal herx !
I know you have a good doctor, I think you are jumping the gun a little at feeling better.
I have been beating on babs for over 10 months now with malarone,zith,artemesinin, clindy and quinine and minocycline. I have also been in treatment since dec of 2007.
babs is a very hard coinfection to get rid of my llmd told me 3 years ago that was going to be the toughest one of all to get rid of and so far he's been 100% correct in every aspect of my treatment.~pj
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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janet thomas
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I tested positive for B. microti (high titer) by MDL lab in NJ. Was treated with Mepron & zith and the headaches went away. Later, I had every test Igenex runs for B. microti and they were all negative.
BTW, initially I had a daily cycle-normal temp am, around 4pm severe chills for couple hours then my temp rose rapidly to 102 or so. Around midnight my temp returned to normal. After 5 days of this I went back to the PCP and finally he consented to run a Western Blot (came back pos). He thought I had malaria and prescribed doxy.
One dose of doxy and the fever/chills stopped. It was my first LLMD who ordered the Babs test.
Long story, sorry. It's now several years later. I thought it possible I still had Babs. I did not have headaches or sweats or any classic Babs symptoms.
After reading liz28's posts I decided to use chloroquine/primaquine.
I took the first dose of chloroquine and within hours felt incredibly better. For me that was absolute proof Babs was still a problem. Tx improved my sleep, stamina, and outlook.
Actually I felt pretty good for a couple of weeks until Babs relapsed. I now plan to continue once weekly primaquine long term or until I can get some tafenoquine.
Lyme came back big time when Babs was controlled. Dealing with that now.
Point of story-Babs is very good at hiding.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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troutscout
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If you have suppressed RBC's and Hemotacrit in blood tests...that's also a good sign of Babs......from what I know.
Not a Doctor...just a Lymie.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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janet thomas
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posted
My most recent LLMD focused on Babesia. He said my erythrocyte count and MCV were high because my body was trying to compensate for the lack of properly functioning RBCs.
Then again, he claimed Alinia & doxy was a cure but all it did for me was cause me to vomit. I never got to full dose but know someone who did for almost a year and it didn't help.
Later she did Riamet and saw improvement but it was not followed by primaquine and so she relapsed.
Dr Nick Harris of Igenex found Babesia in bone marrow.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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blinkie
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posted
Do abx or antimalarials get into bone marrow?
Posts: 1104 | From N.California | Registered: Jan 2008
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janet thomas
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After reading this I assume primaquine does.
To exclude leukemia, a bone-marrow puncture was conducted and a bone-marrow smear was examined by an experienced hematologist. Microscopic examination revealed weak pale red dots in erythrocytes with suspected similarity to Schu�ffner dots, which normally are typical signs of malaria tertiana. However, no malaria parasites were detected. We therefore extracted total DNA from 200 l of the bone-marrow puncture and performed Plasmodium-specific real-time quantitative TaqMan PCR (19). We detected malaria as the underlying source of the symptoms caused by an uncommon mixed-species infection comprising both P. malariae and P. vivax. We calculated the relative loads to be 1,000 and 10 copies per reaction for P. malariae and P. vivax, respectively (ratio of 100:1). The patient was subsequently put on a therapy regimen (day 1, a first dose of 600 mg and a second dose after 6 h of 300 mg; days 2 and 3, 300 mg of each) with chloroquine (Resochin; Bayer Health- Care, Leverkusen, Germany) and, after exclusion of glucose- 6-phosphate dehydrogenase deficiency, with Primaquine (Sanofi- Aventis, Bridgewater, NJ) at 14 consecutive doses of 15 mg daily for 2 weeks, after which the patient recovered uneventfully.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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I'm so confused my head is spinning...well even more so than usual!
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