posted
1. What is the rate of false negatives for Babesia?
2. What kind of sweats are associated as a symptom?
3. Some insist that if you have chronic Lyme, you have Babesia and Bartonella as well. Why is this assumption made?
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
I was waiting to see what others would say!!
1. Who knows? I've seen hundreds here over the years who found out 2-3 yrs into their failed treatment that they had undiagnosed babesia.
2. ?? I didn't have sweats very bad... would just wake up in night pretty sweaty. No big deal for me. (some have drenching sweats)
3. Because most who do not get well find out that a coinfection was holding them back. It makes sense to me that "simple" Lyme is easier to get over than a combo of infections.
Most of my opinions on this are based on years of being on this board and seeing this happen over and over again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
"3. Because most who do not get well find out that a coinfection was holding them back. It makes sense to me that "simple" Lyme is easier to get over than a combo of infections."
My question here is, what if you have chronic Lyme because of delayed diagnosis rather than treatment failure/plateau?
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
Most of the testing will come back negative as our immune systems are so compromised. LLMD's usually assume that if you have Lyme you picked up at least one coinfection.
I tested negative for two out of the three that I have.
Better to treat for coinfections if you don't know for sure because if you have a coinfections in the way, you will not have great success treating the Lyme. You may not have all the symptoms either like TuTu. We are all different in what we have.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Asking all these questions bc my LLMD says I don't have Babs based on a neg blood test.
I have been taking artemesia annua, cryptolepis and sida acuta anyway.
I honestly have a hard time distinguishing between a herx and the disease itself so it's hard to tell if I am getting anywhere or shooting in the dark.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Your Dr. is simply wrong. Not saying he or she is bad. Just wrong, based on the most successful LLMD's consensus that most lyme patients have babesia whether they test pos for it or not.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Docs do miss stuff. So your doc only treats if you get a positive test? What are your symptoms VV?
-------------------- --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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Fatigue Brain Fog Weakness Dysautonomy Twitching Eye Pressure/ irritation Headaches Anxiety Depression Palps/Tachycardia Stinky sweat Cold hands/feet Derealization Low Testosterone and I think "air hunger"
Everything except the first three waxes and waynes
Posts: 922 | From Philadelphia | Registered: Sep 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
For me, the brain fog is/was babs. Air hunger is definitely babs.
If my lyme doc told me I didn't have babs with my babs symptoms, I'd ditch him in a heartbeat, regardless of a negative blood test. Tests are an inaccurate and antiquated way to diagnose lyme and tick borne diseases. Sure they appease the agencies and insurance companies, but they are fallible, and should not be used solely for identification of these diseases.
-------------------- --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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Did those symptoms find relief soon after babs drugs or herbs?
Posts: 922 | From Philadelphia | Registered: Sep 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Page 23 of Burrascano Guidelines (quote below) says that about 66% of lyme patients test positive for babs microti through blood tests. That means that an even greater percent actually have babs microti. Then, you have babs duncani on top of that and all of the other babs strains that they don't yet have tests for.
In our area (Baltimore, Philly, D.C., NoVa), virtually every single lyme patient also has babs and bart. I have only known one person who didn't have all 3 and I have met a lot of lyme patients over 10 years on this board.
I had no babs symptoms, but it showed up on the FISH test thru Igenex. My doc did at least 2 babs tests on me. One was positive and one negative. If the FISH is positive, you know you have it because they actually SAW it in the microscope when looking at your blood.
In my case, I had horrendous babs flares as soon as the doc started treating me for babs. That first week.
I was not diagnosed with lyme until I had it at least 10 years. This is a very, very common story. My first lyme doc treated me only for lyme. I wasted 2 years with him.
Here is the quote from Burrascano Guidelines regarding babs:
"Babesia infection is becoming more commonly recognized, especially in patients who already have Lyme Disease. It has been published that as many as 66% of Lyme patients show serologic evidence of co-infection with Babesia microti. It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme. Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time, including up to several years after the initial infection! Furthermore, such Babesia carriers pose a risk to the blood supply as this infection has been reported to be passed on by blood transfusion.
SYMPTOMS
Clues to the presence of Babesiosis include a more acute initial illness- patients often recall a high fever and chills at the onset of their Lyme. Over time, they can note night sweats, air hunger, an occasional cough, persistent migraine-like headache, a vague sense of imbalance without true vertigo, encephalopathy and fatigue. The fulminant presentations are seen in those who are immunosuppressed, especially if asplenic, and in advanced stages. They include high fevers, shaking chills and hemolysis, and can be fatal.
DIAGNOSTIC TESTS
Diagnostic tests are insensitive and problematic. There are at least thirteen, and possibly as many as two dozen Babesia forms found in ticks, yet we can currently only test for B. microti and WA-1 with our serologic and nuclear tests. Standard blood smears reportedly are reliable for only the first two weeks of infection, thus are not useful for diagnosing later infections and milder ones including carrier states where the germ load is too low to be detected. Therefore, multiple diagnostic test methods are available and each have their own benefits and limitations and often several tests must be done. Be prepared to treat based on clinical presentation, even with negative tests." [end of quote]
Read about the various babs tests on that page also. Too bad your doc doesn't follow the Burrascano Guidelines.
I would not stay with a doctor who relied on test results to determine treatment. That is opposite of what Burrascano says doctors must do with these diseases.
It makes me think the doctor is trying to cover his back in case the state medical board ever comes after him. He will always have a positive test to back up his treatment. There are a number of lyme doctors who have resorted to this approach. They know it isn't best for the patient, but they are in self-protection mode.
Something for you to think about.
If your doc would give you a one month trial of babs meds, that would tell the tale. I'm not saying you would feel better, but you would have a babs flare--a sick reaction--and that would prove the disease is there. I know one lyme doc who gives the patient artemesinin to see if they have a reaction. If they do, then the doc treats them for babs based on that alone.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
"I know one lyme doc who gives the patient artemesinin to see if they have a reaction. If they do, then the doc treats them for babs based on that alone."
I've been on artemisia annua, cryptolepis, and sida acuta this past month. I feel quite bad, but that seems as per usual. Not sure of any particular herx from it. A herx should start within a day or two of starting a med, right?
Posts: 922 | From Philadelphia | Registered: Sep 2012
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Catgirl
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posted
It can be difficult to tell as these infections overlap. However I could tell which symptoms based upon which meds and herbs I was using, as the symptoms were disappearing (babs/parasites). I was surprised to discover my brain fog was babs/parasite related (babs is a parasite). No, relief is not a quick thing. Improvement has been slow with lyme and co infections.
-------------------- --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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posted
I'm just having a very hard time weeding out herxing vs. disease progression.
It's such a bumpy road to begin with I can never seem to tell.
The ONLY thing I have been able to correlate specific relief to so far is the FIR Sauna.
Nothing else has shown a clear beneficial effect.
Oil of oregano may have given me a herx, though it was also timed with my usu monthly flare.
With artemisia annua, I take it 3x a day for 3 days a week, and I have found no specific correlation for each pulse. Sometimes I feel slightly better, sometimes slightly worse when I'm on it.
I've kept notes on doses and symptoms for months, but it all just seems like a murky soup.
Makes me wonder if I should just take a giant cocktail of 20 of the most popular herbs for Lyme and Co and hope for the best.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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annxyzz
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posted
I am with you VV . It is all a fuzzy picture. I think I have babs bec of severe chills that started with the beginning of being sick and lasted many years ( SEVERE CHILLS ) and night sweats. I notice when starting new herbs I will wake up with night sweats and my all over fluish feeling is compounded as is the fatigue. Then within a couple of months the misery lightens up , but my fluishness and fatigue seem to never go away .
Have you tried ivermectin ? I think it hits babs. I can not say I feel better yet , but I herxed intensely for months. It is powerful ! I am on sida acuta and artemesia . Sida acuta is strong for me. I have not tried cryptolepsis or alinia . I recently started colloidal silver after reading several message boards that indicated people using it got MUCH better , some felt cured actually . These people had all been on ABX a few years and never got better .
I hope the silver will help me . I am trying Argentyn 23 , though I read stories of different versions of nano silver also working.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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I haven't tried ivermectin. I'm not sure that any of my recent docs would rx that.
I just started colloidal silver eye drops and will likely start it internally in a couple weeks.
I think my interest in CS and ozone as well is that they are broad spectrum pathogen killers, making it less confusing.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
VV - I didn't test positive for babesia until 1 year into treatment - finally got a positive Babesia FISH last week.
But other on this forum are absolutely right - just because you are negative on a test does NOT mean you do not have babesia, especially when you present with classic clinical signs.
We thought we were done with babs treatment (did it for almost 8 months) but after this test result, we'll have to go back and treat.
But right now bartonella has reared its ugly head (finally!) so we are actively treating it at the moment.
Trust your gut!
Posts: 348 | From NJ | Registered: Sep 2011
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posted
Hi VV, sorry that you feel so bad. My answers to your questions (from my experience-will try to keep it short):
1. As others have said before, test results are so inaccurate that you should exclusively focus on the clinical symptoms
2. To me, it is sweating all out of a sudden in an unlikely situation (when sitting at home while doing nothing)
3. I would definetly agree that co's are a big factor in chronic lyme, especially when being already treated with abx for a long time
A last word from my side, which I hope may help you. When I treated lyme (long term, high dose abx- some symptoms gradually vanished, while others occured I had not experienced before. From a certain point on, there was no improvement while the "new" symptoms were becoming more sever (even though i was taking abx).
I strongly believe that in my case, after having fought lyme for a certain time, babesia rose and made some symptoms worse (can't explain the mechanism behind it but I am convinced that it is like that). Since I am treating babs, things are slowly getting better...
Posts: 78 | From Germany | Registered: Feb 2012
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posted
How profuse is the sweating? Is it the main symptom?
I sweat, but I keep my room really hot. I don't like having cold extremities. I don't notice when I am or am not sweating, bc it doesn't seem like an event. It's just something that gradually gives my shirt wet spots.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
Damn. I am always glued to the bed. Everything I do feels like over-exertion.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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posted
Just ordered some artemisinin. Did some pulses of artemsia annua recently.
Scared of ABX right now though.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I wish I could tolerate Tutu's protocol, but can not bear another ABX .
I am using herbs and started colloidal silver after reading encouraging stories . I am hoping it hits everything ! Droid had a friend cured with it who also had coinfections . It sure packs powerful punch for something that seems so simple and tasteless .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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