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Posted 12/16/2014 3:03 AM (GMT 0)
Today I had a brain MRI for the neuro symptoms I've been having along with an appt with an Infectious Disease dr. He definitely is not on board with the extended ABX treatments for Lyme but agreed to redo the Western Blots for me as the first one came up pos for Lyme exposure.
If it turns up positive again I have no idea as to what he'll do.
I've been sick for five months and feel like I'm slowly getting worse. My bladder hurts, I'm dizzy, my vision is getting blurry, and I can't deal with this numbness and tingling along with the insomnia I have every single night. I'm exhausted.
I remember that my Int Med dr (who first turned me on to the possibility of Lyme) thought my symptoms mirrored that of Bartonella. Initially I never thought this could be Lyme b/c of absence of rash, tick bite, etc but after researching Bart, I'm realizing that my symptoms started after I had two nasty bites that I thought were either fleas or spiders bc first they itched but more so than anything they were tender. about a month later I got a small rash on my stomach that looked like stretch marks. Did anyone with Bart get this?

I guess what I'm really worried about is first, my symptoms getting worse as they have been every day and I am finding it hard to pass any day without anxiety when leaving the house and feeling disoriented, but more so than anything getting a diagnosis from an LLMD that it is Lyme and treating me with abx and it isn't. The ID dr put it in my head today that so many people think they have chronic lyme and are treated unnecessarily and that made me wonder.

More than anything, I can't imagine continuing like this without reaching a conclusion b/c I'm so uncomfortable. Sometimes I feel like I'm going to die this way, getting sicker and sicker and unable to figure out what's wrong.
Posted 12/16/2014 3:08 AM (GMT 0)
It sounds like lyme and/or bart ( and other coinfections). Many doctors who are not llmd's have no idea about lyme, even if they are smart dr's!
A llmd would put you on treatment right away given your symptoms.

Do you have access to an llmd?
did you get the IGENEX test for lyme? that is a more accurate one.

From your symptoms it matches so much of what other people with lyme and bart have- that it really sounds like it. So it is best if you can find a dr who you don't have to prove this to but you can help you.
I think you can post on here asking for an llmd in your area? I forget how it works but one of the moderators can help you with it.
ALso, you can go to the ILADS website to find an llmd in your area.
Posted 12/16/2014 3:13 AM (GMT 0)
Thank you, Katebirch. According to the ILADS site the closest LLMD is three hours away but I was told that an Int Med dr near me does testing for Lyme. I hope they're right bc I'm literally so uncomfortable right now and don't know where else to turn. It does kind of scare me that drs can treat you solely based on symptoms- what if they are wrong?
Posted 12/16/2014 3:22 AM (GMT 0)
the igenex test is a more sensitive one for lyme- have you had that one?
Often times llmds treat for symptoms because the particular combination of symptoms you have are so common for lyme.

So you can start treatment, and first see if you get a flare up- a herx ( where it gets worse for a week or so before it gets better) and then see if symptoms start to improve, and then you know it is working.

wow though 3 hrs away is far. I wonder how the other dr you mentoned is in treating it?
Also you can call Igenex and see where the closest person who tests through their lab is, as a start. Sometimes natropathic dr;s are lyme literate so you could look for that too.

In the meantime you could have your dr start you on something basic like doxycycline just to start to knock the bacteria back while you figure things out.
Posted 12/16/2014 3:28 AM (GMT 0)
Thank you Katebirch! If only my dr would give me antibiotics freely I would absolutely start them now.
They think I'm nuts. The doxy would be something def good to ask the Integrative Med dr for on Fri, that's my first meeting with him.
I did an Igenex test, according to Pirouette it tested as "Ind" which meant that there were low levels of the antibodies found, but they listed it as negative on the results page. My CD57 was at a 30 last month and the Igg/Igm test came back pos for exposure to Lyme about three weeks ago.
Three hours is definitely no joke, esp if I have to go back and forth. And I have a 1 yr old and a 3 yr old. No idea how I'm going to swing this.
Posted 12/16/2014 3:32 AM (GMT 0)
oh jeez- did you ask on this forum for recommendations for a closer dr? Or you could google your town or state and lyme- and see what comes up. I bet if you poke around you can find a closer dr.
If they think you are nuts they are not the right ones to see! My regular dr also is totally not lyme literate and had nothing to offer me to help with lyme-- I first went to a local natropath who gave me my first antibitoics, and then later moved to a better dr.

If you don't want to share your location on the forum- maybe one of the moderators can tell you how to find a dr? Someone like Traveler maybe? You can email Traveler and ask her how to find a llmd closer to you, I think her email can be found if you just find a message she posted on and then click on her name- she is one of the moderators.
Use this forum for help- there is a ton of help to be found here.

Also I jusreread your post and the stretch mark rash sounds ike a bartonella rash. If you want to try herbally some people recommend houttuynia tea to heal bartonella. At least as something to do while you find a dr! You can buy the tea in bulk ( like at first Chinese herbs) = but talk to traveler about dosages as she used it well to heal her bartonella. I think it is a small am't of the tea herb in the water, and you work up to three cups a day. It may make you herx first.

Either way you should find the closest lyme literate dr- even if they are not the top llmd, just someone who is literate in lyme. Because it can be a scary process navigating the neurological symptoms. And it is good to have someone guiding you.

Post Edited (Katebirch) : 12/15/2014 8:36:15 PM (GMT-7)

Posted 12/16/2014 3:40 AM (GMT 0)
oh wait- I see you already posted a thread about looking for an llmd in your area.
Posted 12/16/2014 3:45 AM (GMT 0)
I googled your town and lyme dr;s-- found:

https://www.google.com/?gws_rd=ssl#q=virginia+beach+virginia+lyme+disease+doctor
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