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Newly diagnosed and afraid. Negative LYME, positive co-infections

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Posted 8/5/2015 3:33 PM (GMT 0)
Hi,

I am new here but scared so here goes.

I saw a ID doc a few weeks ago for some symptoms that I have been experiencing for 3 years that have been getting worse (mainly neurological). Lyme test came back negative but the BART and BABS came back positive. He wants to  start me on zithromax and mepron. 

How has anyone been with this combo?

i've been reading up on the co-infections and treatment/herxing and it is all overwhleming and scary.

Have you been able to work while during treatment? I cannot afford to be out of work.

Trying not to freak out but the fear is out of control.

Posted 8/5/2015 4:59 PM (GMT 0)
Can you tell us more-- how was the Lyme test "negative"? Did he run a western blot? If you have bartonella and babesia, you also likely have Lyme.

Zithromax and Mepron is a very common combo for babesia.

In addition, Hopeful213, I recommend finding a Lyme Literate doctor, not an infectious disease doctor. ID doctors don't like to treat for the required amount of time.

Try looking for a ILADS trained LLMD here:

http://ilads.org/ilads_media/physician-referral/

 

Posted 8/5/2015 4:59 PM (GMT 0)
Hi Hopeful213 - welcome to our community. I know it's scary to have the diagnosis coupled with symptoms for 3 years. But, I'm glad you found us, and have a diagnosis...now you can treat and work on getting better.

To start, you will not want to be treated by an ID Dr. He/she will under-treat you as the ID Dr.'s pretty much believe that a few weeks of antibiotics is all you need.
That is not the case.

Since your infection is three years old - you have chronic lyme. I know you tested negative for lyme, but when you are positive for bart and babs, you will need lyme treatment as well. The good news is the antibiotics that are used with the bart and babs treatments will work on the lyme as well.
The testing for these infections isn't accurate/reliable...so even though your lyme test came back negative...you most likely do have lyme disease.

So Mepron and zithromax - that will be targeting lyme and babesia.

I had to stop working prior to treatment - i was undiagnosed and my symptoms were to severe to continue working. I have been treating for a year now (with a 2 1/2 month break) and still not well enough to return to work.

It is important for you to see Lyme Literate Dr. - for treatment. We can help you find one.

Start a new thread titled: "Looking for LLMD in/near______" and insert your city/town and State.

Take a deep breath...
Posted 8/5/2015 5:02 PM (GMT 0)
Girlie we posted at the same time! :D
Posted 8/5/2015 5:05 PM (GMT 0)
I see that Sarah! Well, it doesn't hurt to hear it twice, right?


Hopeful -please enable your email address if you plan on starting a thread to look for a LLMD. - We can't post the names of the Dr.'s on the forum - for privacy reasons.

Also, when you have a moment - you might find the "New to Lyme?...Start Here!" thread at the top of the page informative...it's full of good information. So, take a look, keep reading, posting, asking questions.
Posted 8/5/2015 5:19 PM (GMT 0)
Hi everyone!

I'm sad to say glad to be here but still glad, you know?

I wish I had my lab results with me. I tested positive on 2 bands (41 and 58).

I was tested 3 years ago from another ID who said I did not have LYME. Think he did the generic test.

I went to a new doc (based on a recommendation from someone) who said that my symptoms sounded like Lyme and that he was going to test for LYME and co-infections.

How do

Once the results came back, he said that the LYME was neg but that the BART and BABS were positive and that I needed to start treatment. He called in the meds and here I am.

I haven't picked up the meds just yet as my head is swirling with information.

Ok, I have enabled my email address.

I've started reading the "new to Lyme" post and I am scared and overwhelmed but thank you so much for responding.
Posted 8/5/2015 5:26 PM (GMT 0)
So, are you getting treated by the ID Dr.?
That's good to get started on the antibiotics, but you really should see a Lyme Literate Dr. - one that is ILADS trained...as they know how to treat lyme disease...they are the 'experts' in that field.

I would like to suggest that when you pick up your prescription, please start one of the two meds by itself first...and after several days - add in the second one.
So, start with the zithromax - what dose were you prescribed?

If you start both the zithro and mepron full dose - you could suffer from a massive herx...which would mean an increase in your symptoms. But, if you start low, one at a time, your herxes are likely to be more manageable.

You should pay particular attention to the detox section in the "New to Lyme" thread - and I would start employing several detox regimens - a.s.a.p. Effective detoxing will help manage your herxes....

I don't know if you will be able to continue to work during treatment - but if you try to manage the herxing - by what was suggested - starting low and going slow with the treatment and also with effective detoxing, your chances are better that you will be more functional during treatment.

Good luck!
Posted 8/5/2015 5:31 PM (GMT 0)
I wanted to mention this subject in a separate post - don't want it to get lost in the other information;

Also make sure you take probiotics...start them now, too.

The antibiotics will kill off the good bacteria in your gut...you NEED this bacteria...the more the good bacteria is killed, the more opportunity the bad bacteria will flourish.. you don't want that.

So, the probiotics are to be taken a couple hours AWAY from the antibiotics...so two hours before, and/or two hours after.

Often, people will take their last dose of antibiotics in the evening - maybe 7:00 p.m. and then before going to bed - take their probiotics....I do that, plus I get some in in the middle of the day - mid-afternoon.
Posted 8/5/2015 6:52 PM (GMT 0)
Thanks girlie!

Sorry for the confusion. Doc #1 was an ID doc (I had just returned from a trip overseas so they wanted to test me for any infectious diseases).

I was a member of another board and requested an LLMD and was given a few names. I called Doc #2 (not realizing he was an ID until yesterday when I googled him but that he has a specialty in LYME).

So yes, I guess I am starting treatment via the ID #2.

I have an appointment with him tomorrow b/c I have a lot of questions that we did not tackle over the phone (that's how he gave me the results and then called in the antibiotics).

How much probiotics should I take? What milligram?

I was prescribed 500 mg of the zithro.

Is herxing a given? Does everyone experience this?

I hope I can still work. I cannot afford to lose my job. I live alone and all my bills are paid on my own.

I guess I will need to make a post about LLMD's in my area.
Posted 8/5/2015 7:20 PM (GMT 0)
So - Your zithro is most likely 250 mg twice daily?

Start with once daily 250 mg. Do that for a week. And Detox...epsom salt baths, drink 8 glasses of water daily - squeeze fresh lemon juice into some of them (drink with a straw to protect your teeth),
take Milk thistle seed extract to protect your liver, dry-brush your skin with a natural bristle brush prior to the baths, make sure you are having bowel movements at least once daily. Light exercise each day to keep the lymphatic system moving the toxins out. These are a few ideas to get you going.

Not everyone experiences herxing...but from what I have seen on this forum, most people do. The detoxing will help with the herxes...

Starting the antibiotic on lower dose...will help with herxing, too.
If you herx on the lower dose of zithro....you can stay on that low dose for another week...until you feel it's manageable...then add the second 250 mg in.
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