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question has anyone gotten worse then better confused

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Lyme Disease
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Posted 5/27/2015 3:36 PM (GMT 0)
So i just got back from the doctor after 3 months of treatment turns out all the bloodwork came back a lot worse then when i started. Even the doctor is shocked to say the least. How long does this nighmare last before you usually start to feel better not worse. Also can i have a recommendation for a LLMD in NYC. My mother would like me to see one up there. Feeling hopeless
Posted 5/27/2015 4:07 PM (GMT 0)
Viola - What bloodwork showed you were worse?

I know symptom wise, we can get worse before better...how are your symptoms?
Maybe there's inflammation from the die-off? Are you talking about inflammation markers?

What did your LLMD say about the bloodwork being worse? He must have seen this before?
Posted 5/27/2015 4:08 PM (GMT 0)
Hey viola, are you seeing an LLMD now?  Message me I have an LLMD in NYC.  He's very expensive though just FYI.
Posted 5/27/2015 4:14 PM (GMT 0)
You can also email me, as I have listings for both New York state as well as NYC.

I too am curious in what ways your blood work is worse. There are so many things that can happen when someone starts treatments it's important to clarify things for us so that we can better help you know what is "normal" for us, and what needs to be addressed.

But typically, yes, things often get worse before they get better, depending on exactly what you are referring to.
Posted 5/27/2015 4:17 PM (GMT 0)
Some bands that werent reactive are now reactive. The ab screening is now at 2.04 and 3 months ago was 1.94. Some EBV test are now at 5.04 which normal would be under 1.10. I am not sure what he thinks he was shocked to say the least. I am not very confident with him now. What suprised me is that he put me back on minocyline but lowered the dose and i started rocephin today injections
Posted 5/27/2015 4:21 PM (GMT 0)
You definitely need to see a doctor that this isn't shocking to!! An experienced, ILADS trained LLMD shouldn't be shocked at those results.

This is all quite normal. Your immune system is trying to kick in and that's why you are having more bands show up on your tests.

It's also very normal for viruses to become more active once you start treatments, as your body is under a heavy load anyway, and now you have added in treatments.

You should have been put on an antiviral though to help you with the EBV. You can use a supplement to help lower your levels though - L-lysine has been clinically proven to reduce the symptoms of EBV and help get the numbers back down to "normal" levels. If you wish more information on this, just ask.
Posted 5/27/2015 4:23 PM (GMT 0)
Yes, Trav is right about seeing another Dr. You have more bands showing up because your body is fighting it now.
Posted 5/27/2015 4:31 PM (GMT 0)
Ok...yes i think i will spend my summer in nyc..i live in Tampa but my mother freaked out when i sent her my blood work and told her the doc was shocked. I have both good and bad days. I dont feel worse then before. I will be retested in 3 months so hoping for the best.
Posted 5/27/2015 4:34 PM (GMT 0)
Btw I am seeing a infectious disease doctor. Guess i need another doctor.
Posted 5/27/2015 4:35 PM (GMT 0)
There really is no reason for retesting - once all the band that are going to show up do, then things won't change necessarily. These tests weren't even designed to diagnose the disease, only track it, so trying to use it to see how someone is healing is a completely wrong use of it - it just won't work.

Why not get in to see a more experienced LLMD? That way you will know that you are getting the best help possible and you won't be seeing someone that keeps getting stumped by the simple parts of healing these infections. This is a highly complex infection - the last thing you should be doing is trying to educate your doctor as you are trying to heal.

You can send me an email with the area in which you would like to find a LLMD and I'll be happy to share whatever information I have with you.
Posted 5/27/2015 4:45 PM (GMT 0)
LOL! Most definitely you need a new doc!! Unless he has had ILADS training (there are a few), they are actually fighting against us for proper treatment of these infections!!

ID doc's typically believe a short course of abx is all that's necessary, and you likely aren't on a very high dose of abx - they usually only prescribe doses high enough to stop the bacteria from replicating, not a high enough dose to kill the bacteria, so as soon as you stop abx, you relapse, then are told that you have some other mysterious condition (Post Lyme Disease Syndrome), rather than what you really have now thanks to their treatments - chronic Lyme disease.
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