posted
Hi everyone: I tested negative for babesia though I have continued to have symptoms and when I am on malerone or mepron, they are much improved.
My question is about the testing- how can a blood slide test miss it (Igenex- I think it was an assay)? I am guessing because it is not in all of the blood cells? I would love the answer to this.
Also- my RBC's have been low and my MCV's have been high. Is this indicative of Babesia.
Any help would be greatly appreciated. Thanks!
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hello:
I wish I could answer your question because I too want to know this answer. But I can tell you that I have had babesia for over 10 years and test positive off and on. But what is ALWAYS the case is that if I don't take my malarial medications I slide backwards into real hell within days. I have taken every antimalarial out there. And I have tested positive for more than one strain.
Yet, a blood smear recently taken here in Switzerland where I live was negative. Of course it was not a FISH test. A FISH from Igenex is always positive for me.
But the smear was negative, and the doctor told me I did not have babesia, and I was in a puddle of babesia symptoms that was taking me out.
I restarted my malarial meds against his recommendation and bamo, symptoms receeded so I was functioning again.
I can say that over the time I have been on this website, this question has been asked before.
Bottom line is, if you have symptoms and the malarial treatments directly affect them, then you have babesia and should continue to treat.
I am sorry you have babesia and my wishes for healing go out to you. And I wish you the best of luck on your healing journey. Not every case is as stubborn as mine, so don't be discouraged.
Remember the body has tremendous abilities to heal.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
| IP: Logged |
posted
Thank you Mary. I needed this encouragement. I have a phone consult Tuesday so I will ask these questions then too...
I am really buckling down to do everything I can for my body. I have leaky gut we believe so it is time to really step it up a notch. Tonight I will be buying Kombucha, digestive enzymes and keifer.
And then avoiding all allergens- I have many so this is not easy... but again, the result of the leaky gut we think.
Thank you again for your encouragement. I think we have to do what we have to do with these infections in order to function.
Take good care-
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Veinous blood from a standard blood draw is not likely to contain many Babesia organisms. Babesia sets up camp in the smallest capillaries of the brain, internal organs and extremities. It is not in high volume in general circulation.
A finger stick blood draw is more likely to contain Babesia organisms.
Keep treating. I'm in the same boat, but with less severe symptoms. I treated for a year, went into remission for 18 months (for Babs, anyway, was still treating Bart and Lyme), and now I'm back in Babesia treatment. As the months tick by, I realize it will probably take another year to hit remission again.
Consider a round of Primaquine/Chloroquine at the end of treatment. In malaria, it's called "radical cure." It kills the hypnozooites (the babies) that reside in the liver.
posted
Boxer Mom- you are so dear. Thank you for the encouragement. I have a phone consult tomorrow and I am going to ask about this. Thank you again for your compassion as always... You will get to remission as well. Godspeed to you...
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
posted
Boxer, Wow, I learned something there. I did not know
about finger stick, and babies residing in liver.
I have long suspected babs for me, but my tests
have never shown it. I tried mepron for a week or
two once but it upset my stomach so bad I couldn't
continue. I was still trying to work at the time
My liver keeps swelling and no one can figure out
why, liver function tests all normal. I wonder
if babs is the cause? My llmd blames EBV, but its
been happening for years, even though I've been
on Valtrex for years too.
Is there a relatively inexpensive med I could try
to see if it may help on my own. My doc won't
listen to me on it. The Prim/Chlor you mention,
would that be a place to start? Thanks for any
help with this. Lately, I've been so dizzy and
neuropathy is worsening, even though I'm still on
my lyme treatment, it must be something else. I
just don't buy that the EBV is doing all this..
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Dizziness is a classic Babesia symptom. Neuropathy can be due to any of these crazy infections, but Babs is definitely a contender. I have 3 numb toes due to Babs.
Malaria swells the spleen and liver. Anything Malaria can do, Babesia can do better!
I wouldn't start with Primaquine/Chloroquine if your pathogen load is high. I would do a trial of Artemisinin. You can buy it online. If you have Babs, you will herx with typical symptoms. I had no "typical" Babs symptoms until I started Mepron/Zith. Then I was a walking (barely) Babs symptom.
I don't know what's wrong with your doc. The vast, vast majority of us have the 3 Bs: Borrelia, Bartonella, Babesia. The best docs treat for them all.
As for EBV, nobody knows its contribution to our symptom picture. We all seem to have it, but plenty get well without ever treating for it.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic