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Babesiosis Positive

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Posted 5/6/2015 6:33 PM (GMT 0)

After almost 3 years of being sick I finally gave in and paid the HUNDREDS of dollars, out-of-pocket, to have the official Lyme testing done. My results came back yesterday. I was convinced that as soon as I saw the results I would FINALLY have ALL of the answers. I was Really hoping to have some peace of mind. Not the case. smhair My results came back positive for Babesiosis and my Lyme came back indeterminate. I have always been told that inderterminate really means positive because if it was negative it would show negative.

My Naturopath has been treating my for Lyme for a few months now because we were convinced that's what was wrong with me. AND my body reacted the way she expected it would when we started Lyme treatment. I am just feel a little defeated. I have seen SO MANY Drs and spent a TON of money to try and figure out what is wrong with me. ALL of the providers I have seen, including my NP at one point, have told me that there is NOTHING wrong with me. I REFUSED to believe that. My symptoms started when I was 29, a young, healthy, very outgoing woman prior to the start of symptoms. I KNOW there is something wrong. I have been doing research on Babesiosis but not finding much.

I am curerntly playing phone tag with my NPs office so I can get scheduled for an appt to discuss my results and figure out how to treat from this point forward. 

Is it  likely to be positive for Babesiosis and NOT have Lyme? Any information that anyone can tell me about Babesiosis would be very helpful. I am more than happy to give more details about my illness so please don't hesitate to ask.

THANKS :)

Posted 5/6/2015 6:50 PM (GMT 0)
Hi jillbob - I dont think this test result changes much...other than maybe time to focus on babesia treatment...
It is a coinfection of lyme.

Rarely does the co-infection occur alone, it's usually with lyme disease.
Posted 5/6/2015 6:53 PM (GMT 0)
I'm not sure why you are feeling discouraged! You should be relieved to have your answer: Lyme and Babesia.
Posted 5/6/2015 7:48 PM (GMT 0)
Sarah,
I think the biggest reason why I am feeling this way is because I really thought the lyme would come back positive but based on the results the CDC does not consider me positive. That being said, even if my NP feels that I am positive, which she does, it is unlikely that insurance will cover any of my treatment.
I was just really hoping for a clear positive result, so there was no room for anyone to doubt it.
Also, after 3 years of everyone telling you there is nothing wrong with you, you begin to think that maybe you ARE crazy.

Don't get me wrong, I am HAPPY to finally have some answers and anxious to have my next appt with my NP so we can start more aggressive treatment.
Posted 5/6/2015 7:52 PM (GMT 0)
One thing to remember: There are many, many false negatives.

I think it's safe to say you have lyme and babesia.

Unfortunately many people do not get insurance coverage for their treatment.
Hopefully the positive babesia result will help with that.

Is your NP Lyme Literate? Is she educated and experienced enough to treat you?

You need an expert in Lyme disease and co's.

Good luck.

Also, if you haven't already done so, please take a look at the thread at the top of the page titled: "New to Lyme?...Start Here!" It's full of good in formation.

And...keep coming back to read, post, ask questions...we'll help you through this!!
Posted 5/6/2015 8:12 PM (GMT 0)
Girlie,
Thank you for all of the helpful info. My NP is Lyme Literate. She has successfully treated many patients with chronic lyme without the use of any prescription medications. Along with all of the lyme symptoms I have also been dealing with systemic yeast overgrowth, leaky gut and MULTIPLE NEW food sensitivities. I spent most of my teenage years on antibiotics because of recurrent UTIs and just prior to the onset of my lyme symptoms I had been on multiple antibiotics for a chronic sinus infection, which earned me a trip to the OR AND more antibiotics post surgery. My NP feels that all of the antibiotics have led me to the issues I am having in my gut. Currently, my NP is treating me with Teasel root drops. It was kind of her way of diagnosing if I had lyme or not. If the drops didn't change my symptoms = No lyme, if drops made my symptoms flare= Positive lyme. Within 2 days of starting the drops my symptoms had gotten MUCH worse and she "diagnosed" me as lyme positive. I have also been taking high doses of Chlorella, to help flush the toxins out of my system. I am anxious to see what she is thinking for treatment now that we have the lab results. I am all curious to see if she thinks we can treat this without using antibiotics.
Posted 5/6/2015 8:28 PM (GMT 0)
There are many people, including forum members who have healed with non-antibiotic approach.

One of the forum moderators, Traveler, is one example. She has healed twice using an herbal tea along with supporting other body functions.

You might want to look up Buhner's protocol ( if you google Buhner, his website should come up)...it's a popular herbal approach to treating lyme and co-infections.

Teasel drops is often part of an herbal protocol.

Have you read the thread at the top of the page: "New to Lyme...." - and have you started detoxing?
Posted 5/6/2015 10:15 PM (GMT 0)
I am working my way through the "new to lyme" thread. Tons of great info! I also should probably clarify that when I say NP I am referring to my naturopathic doctor not Nurse practitioner. Just realized I should say ND. The only detoxing I am doing is the chlorella. I am sure a lot with my treatment plan is going to change at my next appt.
Posted 5/6/2015 10:18 PM (GMT 0)
Two easy and inexpensive detox methods I do regularly:

Drink lots of water, and squeeze lemon juice into some of the glasses.

Warm epsom salt baths...don't stay in too long...5-10 minutes will do it.
Posted 5/6/2015 10:42 PM (GMT 0)
Hi Jillbob!!
Welcome to our community!! I"m so glad you found us!

One of the reasons we always stress the importance of using an experienced Lyme literate doctor is because all too many people have found out the hard way that an inexperienced Doc can get in over their head quickly with some people - and we don't want you to be the one who suffers for your doctors lack of experience.


Can an inexperienced doc treat these infections? Yes, but it takes a TON of work by the patient to make sure that the doc has all the information when they need it - that's what I had to use as there are no Lyme literate doctors in my state. So it's best to use those doc's that have plenty of experience, honestly. But, if you don't have that choice, then ask a ton of questions here and we can help you stay on top of what's going on in your treatments and can help you find the information that you may need to present to you doc if you need to.

Another couple of really great detox ideas that don't cost much and are easy to do are dry skin brushing and oil pulling. You will want to eventually get as many of the detox pathways that your body has working as well as they can in order to help you get through treatments easier.

When is your next appt with your doc? Please let us know how it goes and what your protocol will be!! We are always curious as to what others are doing!

And honestly, indeterminate isn't negative. It means that you had a reaction on the key bands of the test, but it wasn't quite strong enough of a reaction to be considered "fully positive". If your doc is truly Lyme literate, she will treat anyway. And I'm sorry that your insurance likely won't help pay for your treatments, but as Girlie said - not many do anyway.

Find out if you can still submit test results and get help in paying for your Babesia treatment though!! Any help is better than none!
Posted 5/7/2015 10:14 AM (GMT 0)
Nothing against NP's, but I'd want to see a LLMD if I had Lyme and Babesia. The positive babesia test is a very good thing because it means your insurance should pay for the anti-protozoal agents you use and they are expensive. Many people have babesia and test negative and their insurance won't pay. Even if it doesn't seem so, you are very fortunate.
Posted 5/7/2015 3:34 PM (GMT 0)
Traveler and Georgia,

I am seeing my Naturopath today at 4:00 to discuss treatment. I will keep you posted on how that goes. I really don't want to use ABX but I also don't want to drag treatment out forever. I AM SO READY to have my life back. I have been married for less than a year, between my husband and I  we have 4 kids (ages 6-12) and I work full-time as an RN. Life is crazy busy. I have a lot of guilt over the the time I am missing out on with my kids. So much of the past 3 years have been spent with me sleeping and not wanting to leave the couch. I want to be the energetic, outgoing person I was before I got sick.

I already know that my ND is NOT big on prescribing ANY prescription medications.  If I do choose to go the ABX route I might need some help locating a LLMD in my area.

I have a cart full of suff on Amazon right now, dry brush, epsom salt and hydrogen peroxide :) I did some oil pulling in the past, when first dx with heavy metal toxicity, but haven't done it in a while. I should start again.

Traveler,

How long did you go undiagnosed? How long was treatment with just herbs? I really want to go that route but I also know a couple of people who have been successfully treated that way but it took YEARS. Could I really be looking at years of treatment if I choose herbal treatment? I know my ND should be able to give me some answers, later today, but I am curious how treatment has gone for others.

Posted 5/7/2015 5:19 PM (GMT 0)
Georgia - why not a LLND?

That's who I see - he is ILADS trained and prescribes antibiotics as well as herbal remedies.

I don't think it matters if it's a ND or an MD - they need to be qualified and experienced.
Posted 5/7/2015 5:40 PM (GMT 0)
Jill - It often takes a few years even if you go the antibiotic route. This is not a quick fix, that's for sure.

But, even if it is a year or two... to get completely well, you will see improvements along the way.
Posted 5/8/2015 10:19 AM (GMT 0)

Girlie said...
Georgia - why not a LLND?

That's who I see - he is ILADS trained and prescribes antibiotics as well as herbal remedies.

I don't think it matters if it's a ND or an MD - they need to be qualified and experienced.

You're right Girlie, but some ND's can't write prescriptions. As long as they can write Rx's, I'm fine for Lyme and Babesia treatments.
Posted 5/8/2015 4:22 PM (GMT 0)
Georgia - so, in your opinion - LD and co's need to be treated with antibiotics?

(Just wondering what your opinion is)
Posted 5/8/2015 5:02 PM (GMT 0)

Girlie said...
Georgia - so, in your opinion - LD and co's need to be treated with antibiotics?

(Just wondering what your opinion is)


I only have experience treating one person and that is me. I don't really have an answer to that question other than to say I would rather have all options on the table when starting a multi-pathogen infection. Mepron did me much more good than anything I've taken and it's prescription only. I do believe that almost everyone on this board has a multi-pathogen infection. I also believe that many of the babesia patients have another strain of Babesia other than WA-1 or MO-1. If you have a positive babesia test, you have one of these two strains. I believe that some of the strains are easily cured while others may not be cured. I think it depends on the strain.
Posted 5/8/2015 5:08 PM (GMT 0)
okay, thanks.

I'm wondering if I could have babesia. So far, my LLND and I have been thinking lyme and bart.

I do have sweats and shivers.... but apparently bart can cause those too. So, I guess treat bart first, and then see what's left after.
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