It's time to shift gears and focus on coinfections for me. Doc is highly suspect of babs based on my current complaints.
My question is... the Igenex testing for babs is fairly expensive. I have read that it can be fairly unreliable too. So should I go to the expense? If I test negitive, we'll just chalk it up to a false negitive and treat anyway.
Thoughts, opinions, or decisions are welcome here!
Posted by Lymetoo (Member # 743) on :
My test from Igenex for babs was "borderline"...I herxed from here to Mars and back on the meds.
I DEFINITELY had it!! I vote for just treating it. You'll KNOW the minute you start taking those drugs whether or not you have it!
Posted by TerryK (Member # 8552) on :
I agree with tutu. Why spend the money if you are going to treat anyway? You'll know by your response to the meds.
Terry
Posted by Geneal (Member # 10375) on :
I spent the money....and my test was negative.
Then I found out one test only tests for two known strains, the other for one.
Waste of my money really (especially around Christmas time)
I herxed big time on malarone/zith.
I agree with the others....treat and save your money for supplements.
Hugs,
Geneal
Posted by adamm (Member # 11910) on :
Just curious: what symptoms do you have that lead your doctor to suspect babs?
(I also suspect that infection.)
Adam
Posted by Lymetoo (Member # 743) on :
For me it was FATIGUE, dizziness, tachycardia, shortness of breath, chills [they were mild for me], pain in my spine, nausea, and lack of appetite.
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
Posted by sixgoofykids (Member # 11141) on :
I tested negative, we're treating anyway.
What's the point of testing?
Posted by Beverly (Member # 1271) on :
I had a positive Babesia test, but both my mother and son did not. If you are having symptoms I vote for just go ahead and treat also, sometimes it is the only way to be sure.
The tests are not 100%.
Posted by notkrazybrian (Member # 10621) on :
bev what were you symptoms for babs? brian
Posted by Beverly (Member # 1271) on :
Hi Brian, well these are from the list above,
Fatigue* Arthralgias* Myalgia*
Headaches* Emotional lability* Depression*
Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills*
Malaise* Shortness of breath* Bleeding tendencies, bruising*
Hyperesthesia* edema* Encephalopathy
********************************************** These are some of my personal symtpoms that cleared up with treatment. I don't know if everyone gets these symptoms, or it is a mixture of Lyme and Babesia? And other co-infections.
Severe anxiety/paranoia food phobias Mental confusion TMJ/ear pain Drooping eyebrow/lid /facial paralysis numbness Severe stiff neck swallowing difficulties Spine pain heart palpitations light and sound sensitivity Anemia shaking heat intolerance
Posted by Vermont_Lymie (Member # 9780) on :
quote:Originally posted by Lymetoo:
I vote for just treating it. You'll KNOW the minute you start taking those drugs whether or not you have it!
I agree with Lymetoo. The tests for babesia are known to be unreliable, since they do not test for every strain of babesia present in ticks.
I had to be convinced to treat for babesia, and was reluctant too. But I took the babesia med prescribed by my llmd (malarone) and had an incredible herx reaction for two months.
It was not easy. But it seems to have improved my health and long-standing symptoms, so I am glad that I am treating it.
Posted by groovy2 (Member # 6304) on :
Hi All
Babs can cause really wacky symptoms -- They can change Quickly - move around -
There is Not a certain order that they show show up in --
These are some of Most common tho --
Night sweats -- Excessive sweating anytime --
Low Body temp 97 - 93 F --
Crazy heart beat -
Air hunger --
Symptoms Worsen at night (2am) -
Excessive sweating started soon after infection- drenching night sweats started about 4 yrs after infection for me - then were constant-
I did not get air hunger for 18 yrs- until I was on Babs treatment for 8 months - - lasted 2 months- now gone - no Fun
Feeling chills or feeling hot or sweating has little to do with your actual body temp - Check temp threw the day -- Average -
Babs is a Very tuff bug -- Very common -
Babs caused my worst symptoms -Many- Extreme Joint Pain was worst ( cracky)-Ouch Joint pain started within 2 months of infection- Was Horrible -- Hell on Earth --
Now 99% gone --AAAhhhh --
My Babs test from Igenx came back IND--
Hope this helps -Jay--
Posted by Geneal (Member # 10375) on :
I had air hunger, balance issues, intermittent fevers/chills, blood in my urine, drenching night sweatsand other symptoms that
I now know were babs related for me as they went away during treatment, but are now coming back:
- Jaw pain/tooth pain
- Stiff neck
- Headaches
- Ear pain (outer ear while sleeping mostly)
- nausea
- Weight loss (Still losing weight)
I did three months of malarone and zithromax and herxed like crazy.
The third month was the worst.
Did really well for about two weeks post treatment and then (play Jaws music)
All of my babs symptoms have come roaring back except I don't have drenching night sweats yet.
I just wake up kind of dewey several times a night.
Good luck. I do believe this is one tough bug to erradicate.
Hugs,
Geneal
Posted by Visual Afterimage Man (Member # 10435) on :
Thanks for the info...
Decision: I'm just going for it.
Posted by randibear (Member # 11290) on :
if you cannot take the meds, is there a "natural" way to treat babs?
Posted by Beverly (Member # 1271) on :
Hi randibear,
You can get the book by Stephen Harrod Buhner, he states in the book herbs you can use to treat Babesia. The one that is not in the book is Cryptolepsis, I just ordered that one for myself.
The herbs are: Artemisinin Red Root Boneset tea
These things have helped me, but I don't know if they would completely get rid of an entrenched babesia infection?
Coconut oil/ Caprylic acid garlic Pau D' Arco Red Clover Olive leaf extract
Posted by mtnwoman (Member # 8385) on :
Beverly, what abx did you take for treating babs?
Geneal, I had similar symptoms. I took Mepron and Ketek and did well. Only did for two months and some sx are returning after about 1 month off.
My Igenex labs were negative for babs. Taking the above meds helped my chest pains, ear and brain pains and my hip and knee pains.
I think I should have done them longer. AND, I wonder if it was the Ketek alone that helped...?
I always seem to do better on anything I take with ketek.
Posted by kelmo (Member # 8797) on :
How many of you had brain lesions with babs?
I'm being tested for it, now.
This is not a good time for me to be down with my daughter going through the babesia/mepron blues.
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by kelmo: How many of you had brain lesions with babs?
I'm being tested for it, now.
This is not a good time for me to be down with my daughter going through the babesia/mepron blues.
Multiple brain lesions (11) to 5mm. No improvement after a year of intensive antibiotics. But at least no increase! Also positive for Babesia WA-1.
Michelle
Posted by Beverly (Member # 1271) on :
I took Malarone, Zithromax and Plaquenil for two years, then I stopped plaquenil and took Bactrim with Malarone, and Zithromax.
Good luck amd hugs to all..
Posted by valymemom (Member # 7076) on :
Go by your symptoms - the tests are so unreliable.
Posted by painted turtle (Member # 7801) on :
If I had it all to do over again (these last two years of diagnosis and treating)...
I would definitely have gotten tested for babesia before treating it. But not the basic blood test since that only looks for one or two of the many strains which is why it is unreliable. I would have, had I known, goten the tests that use the micropscopes to actually see the protazoa in teh red cells.
That's because it is the kind of person I am, I need proof.
However, I treated for it for 3-4 months last summer with mepron and zith, without testing.
Now I have a new LLMD and got the test and am highly dense with babesia but now I don't want to take the treatment because I don't understand why it didn't go away with the previous treatment like it was supposed to. In fact, I don't see how it could have helped at all unless my density was previously a 5, the highest.
They say people can recover from it spontaneously. I wonder how true that is??
Also the medicine just made everything worse for me during babs treatment, I could not move from couch to chair without being out of breath. It was horrific. I felt it may have been the medicine itself causing the trouble, but I'm very stubborn like that.
Posted by Foggy (Member # 1584) on :
Find a LLMD who can diagnose both clinically & with tests.
[ 02. June 2007, 03:37 PM: Message edited by: Foggy ]
Posted by csperanza (Member # 9613) on :
i tested negative for babs but after continuing to be clinically symptomatic my LLMD started treating me for it. he said there are more than 10 strains of babs and the labs test for only 1, so a negative test is less reliable than clinical presentation, fwiw. i had a tremendous improvement after malarone, now he added bactrim to try to finish it off. gah. C