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Dubious borrelia, positive ehrlichia... Treatment ending soon. Still no lyme diagnosis!

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Posted 2/24/2012 12:17 PM (GMT 0)
Hello dear people!

Since a few years I got tons of weird symptoms. I've been collecting proof for a possible lyme infection: To me, this is currently the only disease that can explain the massive amount of weird symptoms I have been getting for the past few years (neurological, gastro- and physcological symptoms). The reason I think I'm walking around with a silent, chronic lyme is becuase of certain tests results: No positives but dubious results. These are my results from my persuit of a lyme diagnosis:

• PCR = Negative
• ELISE 2x = Both negative
• Western BLOT 2x = LGM P100 band shows antibodies / LGG P100 and P41 bands show antibodies. Score 5.5 < 6 = dubious
• LTT = Scores: Borellia afzelii = 2.8 of < 3, dubious - Borellia sens. strict = 3 of < 3, dubious - Borrelia garinii = 1.7 < 3, negative.
• Co-infections: Ricketsiose, bartonella and babesia(only did the blood smear) negative, ehrlichia positive = LGG 1/128, negative lgm < 1/20

I posted here before with a dilemma, I was diagnosed with crohn's. But that diagnose has been removed by the docter, as my symptoms didn't match with the average crohn patient. Meaning I still have no clue what I got, after 2 years of searching for a diagnosis. I've done a lot of testing and bloodwork, so far no doctor has been able to find anything except for an increased cal-protectine in faeces and a positive ehrlichia infection. Everyone keeps telling me I'm perfectly fine. Last time I heard losing weight for no reason, having balance issues and ringing ears, getting random vertigo attacks and rocking sensations etc. etc. is not healthy.

I'm currently on doxycycline 100MG 2x a day for 4 weeks to treat the ehrlichia. So far it's cleared some psychological symptoms (panic, anxiety, edgyness, rushing and impending doom emotions are practically gone). But I do notice a bit of an increase in symptoms and herx-like experiences around night-time when I'm trying to sleep(doesn't seem like A/B side-effects). Sometimes mild, sometimes so bad my body turns cold and sweaty, I get stinging pains at random places in my body while my brain feels like it's tingling and my tinitus increases. Usually lasts an hour or two and happends anywhere from 12:00 to 3:00. Scary stuff.

But I'm afraid what road lies ahead after this treatment. I don't have proof that I have lyme, the only LLMD around here is not treating me for lyme with the results I have at this moment. Where do I go? Do I look for another diagnosis? Do I move on with live and bear with the symptoms, preying they don't get worse and hoping the doxy cleared up enough to get my immune system to pick up things? Or do I look for another LLMD that will diagnose clinically and stuff me with A/B? Or do I take the homeopathic road, treating myself with herbs like cat's claw and teasel, and supplements like pycnogenol, garlic and ginger?

I don't know anymore! All that's keeping me in this fight is my lovely girlfriend, which is getting weird symptoms since a year now too. -.-

I hope you guys can give me advice in battling this hard reality!

I wish you all the best health!
Sincerely,
Damrak

Post Edited (Damrak) : 2/24/2012 5:25:23 AM (GMT-7)

Posted 2/24/2012 1:15 PM (GMT 0)
I'm sorry you are having so much trouble with getting a diagnosis, including from a LLMD. I went through a time when I just tried to deal with things myself and ignore the symptoms. I actually did that for many years prior to seeing a doctor. I allowed Lyme to get pretty bad before I went in. Then when I finally did go in, the doctors said there was nothing wrong with me, so I waited several more months before going to a LLMD.

My non-medically trained opinion is that if you have Erlichia, you most likely have other tick borne infections as well. I would think it's pretty rare to have only contracted Erlichia.

Personally, you will have to decide what you're comfortable with. Some people prefer antibiotics, others prefer herbs, and others do a combination.

I think herbs can work for some people. I know that they can be just as powerful as synthetic medications. I think consulting with a ND or an herbalist is a good idea at least initially. I was worried about mixing herbs or dosing by myself, but I know that some are comfortable following the published herbal protocols on their own.

Also, it may be worth traveling to see another LLMD that matches up with your preferences. I live in an area where there are a few LLMD's within a few hours drive, and they are all much different. One of them uses a lot of IV's, another does oral ABX only, another does a mixture of alternative medicine and ABX. Some want things done their way with very little patient input, others are more open to flexibility with their protocol. Some order lots of tests and others primarily rely on a clinical diagnosis. It's hard to find a good match. Especially when you don't have many to choose from.

Whether it's Lyme or something else, I think it's important that you find the answer. You know when you're not feeling right and you're not a test result. I think it's important to advocate for your own health no matter how many doctors you have to see.
Posted 2/24/2012 3:30 PM (GMT 0)
Thank you summer for taking the time to share your experience and advice, it means alot to me!! I hope you're doing well and I will keep looking for a diagnosis!

It's so hard doing this on my own, I'm so glad I can come to a place like this full of people who understand, listen and care. My friends and family don't understand what's going on inside me at all. I can't explain symptoms. They scratch their heads whenever I mention a possible lyme infection, like I'm some looney cuase I never had a tick bite. They also firmly believe lyme is curable with a single week of AB, even when I tell them it can become chronic. I'll keep searching for a diagnose and hope you guys have more tips/experience to share on getting the answers I seek.

Thank you!
Posted 2/24/2012 4:56 PM (GMT 0)
I also agree that it sounds pretty unlikely to pick up ehrlichia without also getting lyme, but the doxy you have can be useful in a few ways. Any change in symptoms when going on abx is a useful piece of the diagnostic puzzle for a LLMD. It also may be worth re-doing your western blot tests after the 1 month of doxy, as it may serve as an antibiotic challenge which could increase the level of antibodies.
Posted 2/24/2012 5:34 PM (GMT 0)
Hi Damrak,

There is absolutely no earthly reason why you should just have to put up with your symptoms.

Please do find an LLMD that will diagnose you and treat you according to your symptoms. Frankly, anyone doctor not doing that has no right to call themselves an LLMD.

And do get your girlfriend checked out, too. While their is no scientific study proving that the tick borne infections are transferred through intimate contact, there is plenty of evidence that it is possible.

Please do keep fighting to regain your health!
Posted 2/24/2012 7:39 PM (GMT 0)
Hi Damrak!!
I'll chime in here as well and tell you that your symptoms that I saw, indicate a possible Babesia infection as well - the "cold, sweaty" that you described.

If you haven't yet, please read through the "New to Lyme?" thread at the top of the forum - it contains a lot of really good and important info, including symptom lists.

It definitely sounds like you are only seeing a doc who has decided to call him/herself a LLMD, not one who is truly Lyme literate. Even the CDC tells docs that they should not rely on those tests for a diagnosis! They were only meant for tracking purposes to begin with. Sad thing that some docs don't even know that!! These infections are very complex, causing all kinds of other conditions - like Crohn's and all kinds of other gut related issues, Lyme arthritis, and even heart conditions, for example. You will do well to learn all you can about these infections!

The amount of Doxy that you are taking is also too low. Studies prove that doses of Doxy below 400 mgs a day are only bacteriostatic (stops them from replicating, doesn't kill them) rather than bacterocial (bacterial death). I would suggest that you read through Dr. Joseph Burrascano's "Advanced Topics in Lyme Disease" as it is pretty easy to understand and contains a whole lot of basic info about these infections. You can always find a link to this article in our "New to Lyme?" thread, but I"ll put a link here as well: betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf

As Summer said, you do have a choice on how to treat these infections - with abx, herbs, Homeopathic medicine, or I and a few others are using Chinese Medicine - or a kind of combo of all of the above. It depends on what you are most comfortable using, and you will need to have good confidence in your practitioner.

Rather than telling you what's best to do, we are good at helping you to decide what path you would like to follow to heal, and to help you get through your treatment by sharing experiences and what we've read through our own research.

If you need help locating another 'real' LLMD, here are some places that you can go to get started, and you can also start a new thread with the title something like "Looking for LLMD in the ________ area". Please don't give your exact area as this is an 'open' forum - anyone on the internet can read these posts and then you could have a ton of spam suddenly showing up in your inbox! smhair Ack! Also, if you would please, enable your email address in your profile - just be sure to click "show my email address" in your profile. That way other members can contact you with info on any possible LLMD's. We don't allow members to post dr names and contact info on the forum, as they are being attacked and persecuted for helping us.
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